Being happy is only half of the story

Reflections from my Churchill Fellowship trip to Australia: Part 1

A week ago, I landed back in the UK following my amazing 6-week Churchill Fellowship trip to Australia – without doubt the most incredible experience of my life! My travels took me to Brisbane, out to the Great Barrier Reef, down to Sydney, and on to Melbourne. I visited 23 different organisations involved in the field of youth mental health, which included meetings with over a hundred individuals – both those managing and delivering services, as well as young consumers* of those services. In addition to the work aspect of my trip, I filled every minute of my spare time seeing and doing as much as I could, and … oh my … have I seen and done some stuff!

Since I got back, the combination of jet lag, a general tiredness from the full-on-ness of my trip, switching from the long hot sunny days of an Australian spring to the cold and dark of a British winter, and being thrown back into life and all that brings, have left me feeling pretty flat. OK, a bit more than flat … more completely floored! My brain is still buzzing from all I learned and experienced, both professionally and personally, but when you’re immediately confronted by the failings of our mental health services here in the UK, it’s hard to hold on to the hope, to the inspiration, and to the belief that the learning from my Fellowship can really make a difference.

And for so many reasons, I really, really, REALLY want it to make a difference.

As I left Australia on a hot, sunny evening, having been dropped off at the airport by the very lovely Mum of a friend of a friend of a friend, who so generously put me up for free for over 2 weeks while I was in Melbourne and who has become a real friend, I confess I shed a few tears. Thinking back over my time there and all the people I’d met, the friends I’d made and the places I’d visited, I felt a deep sadness and a longing for the experience not to come to an end. I felt I’d only just got started in my exploration of Australia, and the aims of my Fellowship – that I’d only just started to scratch the surface. The desire to learn more, see more and hear more was still burning bright, and reflecting on this as I write, there was a real longing for all the positive examples of best practice and innovation in youth mental health to soak into me through some form of osmosis, to somehow counter all the negative experiences I – and so many others – have had in our interactions with mental health services here in the UK

That longing is still there. And my challenge now is to distil all my learning into a report, blogs, and maybe even a book, in the hope that this can help contribute to the real change that is so desperately needed across our broken mental health system. Sat here, now, that feels like a tall order, but I’m going to give it my best shot.

As I sat on that plane, crossing the 10,000 miles back across the globe, a quote kept coming to me …

“Don’t cry because it’s over, smile because it happened”

… and I started berating myself for feeling sad, and tried to convince myself that I ‘should’ be happy that I had had this incredible experience, and that I was being ungrateful to sit and cry that it had come to an end. And then I thought about it more and it came to me: No, it’s not me that’s wrong, or my feelings, it’s the quote! Why shouldn’t I be sad and cry that it’s over? Why can’t both be true?

As I mused on this, I was struck by a theme of many conversations I’d had while I was in Australia about supporting young people in gaining both the life and emotional skills to become more resilient, to help prevent the rising tide of mental health challenges they are facing. In those conversations we discussed how important it is that young people (in fact, everyone!) gain a better understanding, and acceptance of the full range of emotions. We live in a world which, particularly through the lens of social media, convinces us that being happy is the thing to be, and that if we’re not, then somehow we have failed. We are bombarded by messages about positivity – having a positive mindset, a positive mental attitude, train your brain to be more positive – and when things go wrong or we are sad and grieving, the clear message is that we need to shake it off, dust ourselves down and get back to thinking positively as quickly as possible.

But to me, this misses the point – and creates the problem! Why are we so quick to dismiss and dishonour the ‘bad’ feelings? Why is it that we – society – want to gloss over them, sweep them under the carpet, and give them as little attention as we can? Why are we so obsessed with being positive? And why is it so little space is given to all the other emotions that are a normal part of being human, and which, whether we like it or not, we can’t, and, in my opinion, shouldn’t avoid.

Society has become deeply uncomfortable with the full spectrum of emotions. We don’t give space for grieving, for sadness, fear and anger, disgust, jealousy. They are pushed into the shadow, vilified, rejected. But they are still there, and to dismiss them and disown them is to dismiss and disown a part of ourselves. Being happy has somehow become synonymous with success, and success with perfection, but these create an unrealistic view of the world, and set people up for disappointment and a sense of failure. And it’s hard to be positive about yourself and life if you don’t come up to society’s standards of success and perfection, and from this standpoint, it is therefore hard to feel happy. But these standards are, for a large part, fake, unrealistic and unobtainable …

From the ‘It’s All About Me’ series

While in Melbourne, I visited the National Gallery of Victoria, and stumbled across an exhibition by photographic artist, Polixeni Papapetrou, and her daughter Olympia Nelson, who was 19 at the time the images were created. The series It’s All About Me (2016) was, in part, inspired by Olympia’s analysis of social media and its impact on the behaviour of teenage girls, and as I looked at them I felt so sad that so many people, but especially young people, are driven to conceal or manipulate both appearance and behaviour in the face of unrelenting pressure to be perfect and to present a happy, confident front to the world. Social media, and the media in general, drives so many to display a (often fake) positive spin on their lives to conform to societal expectations that we must be happy; and the more people buy in to this, the more of our lives – the ‘bad’ events, feelings, emotions – we have to deny and reject.

Over the past couple of years, with Jess being as ill as she has been, I have had to face the very real possibility of losing her, and in that I have experienced intense grief and fear. Interestingly and rather troublingly, when I have spoken to my GP about this, I have immediately been offered anti-depressants, which I have repeatedly rejected. This is a classic example of how we ‘treat’ and regard these emotions. For me, those emotions were an entirely normal, albeit deeply painful and sometimes ugly, response to the circumstances I was facing. The message I got back was that it would be better to get rid of them than to experience them, and I could then get back to being ‘ok’ – a step below the golden egg of happiness, but moving in the right direction! I fundamentally disagree.

And maybe this is why there is so much stigma around mental illness, which is sometimes judged to be a moral failing and weakness; that people with depression are ‘being miserable’ and should ‘cheer up’, or people with anxiety disorders are just being self indulgent and a bit pathetic, and should just ‘get over it’. And if they all just thought a bit more positively, they’d be fixed. Because if we’re not being positive, and thinking positive, then we must be being and thinking negatively, and who wants to be judged to be negative?! And if we can’t be positive, then we must be flawed, right? All these judgements come from a society that has become intolerant and afraid of the ‘bad’ emotions, and increasingly has no idea of how to respond to them. They are symptomatic of our constant obsession with, and drive to reach the longed-for utopia: happy land.

But how about if the opposite to positive wasn’t negative, but something gentler like acceptance? Rather than this constant pressure to be positive, which can so easily become yet another stick to beat ourselves with, what about promoting the notion of acceptance. Acceptance of what is, of who we are, of what we have or how we look. Acceptance that life isn’t perfect or pretty or neat, and that shit happens. Acceptance that being happy all the time is neither possible or desirable, and that experiencing a full range of emotions makes us normal human beings. Acceptance that we come in different shapes and sizes and colours, believe different things. In rejecting the parts of ourselves we are told aren’t acceptable or attractive (whatever they may be), we also have to reject those parts in other people, and this breeds intolerance. And that intolerance goes way beyond ourselves and our immediate circle, right up to how we operate as a society.

If we are going to support our children and young people to live well in this world, we need to do more than just educate them in English, Maths and Science; we need to educate them to recognise, understand, acknowledge and be able to respond healthily to the full range of human emotions. We need to tear down the fake wall that happiness is everything, and help our young people to read, accept, and not be afraid of all emotions – the good, the bad and the ugly. And we need to teach them to accept that life doesn’t always go to plan, and give them the tools to deal with the fall-out. If we don’t equip young people emotionally to cope with life and what it throws at them, to open up to unpleasant feelings, and learn not to overreact to them, and not avoid challenging situations when they happen, we will see a continuing increase in mental illness among our young people.

So, back to my quote …

How I feel now is not wrong, or weak, or self-indulgent. I am not going to ignore or reject my feelings, or ‘give myself a shake’ and berate myself for not thinking more positively. I can cry and experience the sadness and know that the smile is still in there too, the gratitude, the happiness. One doesn’t cancel out the other, and I don’t have to reject one for the other to be true – there is room for both to co-exist, and I embrace both equally. If I don’t then I am denying a part of myself, and in doing so I’m actually diminishing the experience I have just had the privilege to live.

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* Consumers is the accepted term in Australia for those using mental health services.

Jacaranda trees, colour and creativity

1. Brisbane (part 1)

So, my Churchill Fellowship is finally underway, having arrived in Brisbane on Tuesday morning after travelling for 36 hours across 10 time zones. It didn’t get off to the most auspicious start, with severe jet lag and food poisoning making my first couple of days here much harder and less enjoyable than I’d hoped. But now, Day 4 and I’ve finally woken up feeling more like my usual self.

That being said, feeling rough hasn’t stopped me from hitting the ground running, and I am enjoying the sights of the city, as well as having already met with some really inspiring and passionate people from a number of organisations. I’ve been sharing some short highlights on my Facebook page, but this blog is my first chance to expand on some of what’s been happening, and will be the first of many I’ll be sharing over my 5 weeks here in Australia. I hope people find it interesting …

It’s late Spring here in Brisbane, and temperatures are a steady 27˚ and pretty much wall-to-wall sunshine. It sounds idyllic, but in reality I am told it is worrying that the Spring rains haven’t amounted to much again, and much of Queensland is impacted by devastating droughts which are threatening entire communities. The risk of bushfires is already very high, and this region hasn’t even begun to see its hottest temperatures. It’s hard to believe, sat here on the balcony of a 6th floor apartment looking down at the Brisbane River, with lush vegetation along its banks, that there are whole towns just outside the city that are now dependent on drinking water being brought in in tankers, and crops and livestock are being decimated. For me, after the relentless rain of the few weeks before I left the UK, this weather is so welcome, but it shows a disturbing trend that has impacted this region over the past few years, and climate change is a massive concern to people here.

By chance, I have found myself in Brisbane during the much-loved jacaranda season. These magnificent trees burst into purple blooms for only a few weeks each year, and are dotted across the city, offering surprising bursts of colour everywhere you look. And it struck me that colour has been a theme that has emerged from my meetings so far – both in the direct use of colour in creating a healing and/or welcoming environment, but also how bringing more colour, more variety and creativity into the services offered to young people can allow us to reach and engage with them in ways that are meaningful to them, and – most importantly – that make a difference and achieve results.

This week, I have met with people from a diverse range of organisations working with young people impacted by mental health issues, or working to raise awareness and understanding. All offer something quite different, operate in different settings and at different levels, and therefore have very different approaches, but all have a common goal – to prevent the escalation of mental illness in young people. Australia, like the majority of more developed countries, has rising levels of mental ill health among its young people, as well as high rates of youth suicide, particularly amongst indigenous communities. But it is also leading the way in youth mental health research and service innovation, and that is encouraging to see.

As ever, there is so much I could say about these meetings, but I will follow my colour and creativity theme for now.

My first meeting was at the Mater Young Adult Health Centre Brisbane (MYAHCB) which opened earlier this year in response to the lack of services in Queensland dedicated to young adults between the ages of 16 – 25. The Emotional Health Unit (EHU) at MYAHCB delivers specialist mental health care to young adults, which is both evidence-based and service-user driven. I met with and was shown around the EHU by Associate Professor Simon Denny, Director of MYAHCB and Young Adult Physician, who talked about how, having a facility specifically for this cohort, allows them to work in a very targeted and specialised way to achieve much more positive results. This is an age group easily lost in the transition from CAMHS to adult mental health services, which often fails to meet their needs or offer treatment in age-appropriate settings. The EHU has a specialist inpatient facility for 16-25s (the only one of its kind in Australia), as well as offering a Recovery College model, running a range of educational emotional health modules that are relevant to the specific challenges of this age group. The modules are co-designed with young people, and everything is delivered in an accessible and ‘upbeat’ environment, with a ‘mix and match’ style programme so young people can select the topics most relevant and of interest to them.

Mater Young Adult Emotional Health Unit

I was particularly struck by the outside space at the Inpatient EHU, which was filled with colour, from the furniture to the beautiful murals. Plants, tactile materials, curves, textures … everywhere there was something to look at, stimulating the senses. It felt calm, welcoming, and brought nature into the inpatient environment in a way which is often lacking back home. I recently read an article about research which has added to the growing body of evidence that natural environments are good for our mental wellbeing (Human brain hard-wired for rural tranquility). It showed that “an area of the brain associated with being in a calm, meditative state lit up when people were shown pictures of rural settings“, which made me think how important it is then to bring this into environments such an psychiatric inpatient units, where people cannot freely be in nature, but who can still enjoy the benefits it brings through sensitive, carefully planned and beautifully created outside spaces.

My next meeting was at one of the headspace centres, of which there are over a hundred across Australia, and which offer a one-stop-shop for young people age 12-25 for mental and physical health, drug and alcohol support, and employment and work skills support. Nundah is a suburb of Brisbane, about half an hour outside the city centre, and I got off the train a little disoriented (my second day, and still suffering the effects of jet lag and food poisoning!) and slightly anxious that I might not be able to find the centre. I needn’t have worried! As I walked up from the station, there was this bright, colourful building standing proudly and prominently on the main street, and I could not have been made to feel more welcome. The team, including two members of their Youth Reference Group who are involved in service co-design, showed me round the Centre, with every room filled with colour and comfort, including the GP consultation room. No white walls here! I will share more about headspace and its work another time …

“Colour outside the lines, live outside the box. Don’t let anyone tell you what to do, or not. Don’t be afraid, listen to your heart.” – Jay Woodman

An organisation called Mind Blank uses forum theatre to engage with young people in schools across Australia to raise awareness around mental health challenges to prevent suicide, and I met Ally Kelly, the founder and CEO, to hear about their innovative and highly successful approach. Like me, Ally was motivated by her own family’s experiences of mental illness to set up her organisation, and she is a passionate and vibrant woman with a desire to drive change. Working creatively to engage with young people, professional actors bring true stories to life, with the young people interacting with the performers to find solutions to the scenarios played out. Mind Blank’s workshops help young people to know what to do when faced with challenges, either within themselves or in others, where and how to seek help, and to encourage young people to talk to someone about their mental health issues. Ally’s approach is all about connecting communities – not just the young people, but also their whole school environment, and parents and carers – to prevent suicide.

My final meeting this week was with an amazing organisation called HYPAR (Helping Young People at Risk), that provides male mentoring, support and respite for males aged 6 to 30 years, who have complex needs and challenging behaviour. HYPAR is all about building positive relationships and supportive partnerships to increase confidence, independence and resilience through undertaking activities such as abseiling, kayaking, mountain biking and hiking. They work with young men impacted by trauma, abuse and those with mental health issues, as well as young males with disabilities, autism, ADHD and behavioural challenges, including those at risk of entering the criminal justice system. Ross Barns, the founder, talked with such passion about HYPAR’s journey over the past 10 years, which has seen it grow from just him to over 120 mentors, and a number of residential respite houses – it’s an impressive story!

Ross absolutely believes in the power of relationship in making a difference to the young men they work with, and HYPAR’s results speak volumes. He and his organisation have worked and thought creatively to engage with young men who would otherwise have been sidelined by more mainstream services. He may have a slightly maverick approach, but getting outside, using physical activity to get alongside these young men, has allowed them to bring about real change for their clients, and it is clear he refuses to give up on any of them. His passion and enthusiasm are infectious, and I can imagine the difference his mentors must make to the young men they work with, many of whom lack positive male role models in their lives. This is a whole different version of creativity, but it is creativity nonetheless!

So, my first four days in Australia have been a bit of a whirlwind, but I already feel inspired by the possibilities of what can happen when we think differently, do differently and design services that are all about the young people we want to help. If we lose sight of that, then we stop creating and running services that meet their needs – and where’s the point in that? We have to be prepared to take chances, shake things up, and get colourful and creative with our thinking to bring back colour into the lives of our young people impacted by mental health challenges.

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I am currently on the first leg of my Churchill Fellowship, researching international best practice in early intervention services for young people. During my time in Australia, I am looking to connect with organisations and individuals delivering support to young people impacted by mental health issues and to identify community based early intervention initiatives that are successfully preventing escalation and recurrence. I am interested in visiting small local groups and projects that have found ways to become sustainable, but also national and state initiatives. Within my general interest in early intervention and its impact, I am particularly interested in peer support models, and looking at the ways in which parents and carers can be engaged and supported to be part of the solution.

I will be in Australia from 22 October to 28 November, visiting Brisbane, Sydney and Melbourne.

Next year, the second leg of my research will take me to Finland.

Churchill Trust Fellowship – let the adventure begin …

2 years ago, I submitted my application to the Winston Churchill Memorial Trust for a Fellowship to research early intervention initiatives preventing the escalation and recurrence of mental health issues in young people. I had no expectation that it would be successful, but it was!

Now, 2 years on, and I am finally about to embark on the first leg of my research … and I leave for Australia on Sunday evening. I still don’t fully believe it is happening, and I don’t think I’ve ever been so far outside my comfort zone – and at the same time I am immensely proud to have this incredible opportunity.

Planning this trip, and making the decision to go against the backdrop of everything that has been going on with Jess (read my blogs on mental health for further info), has been one of the hardest things I have ever done. But it is precisely because of everything that has been going on that this research is so important!

The Churchill Trust awards travel grants to UK citizens to explore ideas and projects overseas, and to bring back learning to make a difference and inspire change here at home. So that is what I’m going to try and do! Australia is leading the world in youth mental health research and service innovation, and I will be meeting some extraordinary people while I’m there. I will also be speaking at the 5th International Conference of Youth Mental Health in Brisbane, speaking about my experience of setting up The Project. It’s all a bit surreal really!

Travelling across the world on my own, planning meetings, finding my way around, giving talks – oh my! Wish me luck …

Meeting my MP: escalating my concerns about our broken mental health system

Last week I met with my MP, Neil Parish.  This was, in part, a continuation of my attempt to get justice for Jess for the shocking treatment she has received under Devon Partnership Trust (DPT), but also in recognition that these service failings at local level are driven by the failure of our Government to prioritise and invest in mental health services nationally.  Our mental health system is fragmented, chaotic and disintegrating, and Jess is just one of thousands who are caught up in this.  The consequences are devastating.

I also wanted to highlight to him the wider impact of these failings – on parents, carers and families, on the NHS and on the economy.  The system is no longer fit for purpose, and is utterly failing to meet the needs of those it purports to help – it has to change, has to reform, and it won’t happen unless there is awareness of what is going on.  I have followed DPT’s official channels for making complaints, and have been consistently disappointed by their failure to acknowledge the damage caused by poor services, broken lines of communication, inconsistent and inadequate standards of care and the resulting trauma, both to patients and their families.  Their lack of accountability is truly shocking, with them always seemingly finding a way to avoid taking responsibility for the consequences of their actions and decision-making processes.  The complaints system yields very little, waiting months for investigations to be carried out, only to find what you get back is several pages giving you a blow by blow account of what you already knew had happened, followed by a lot of “we are sorry that this happened”, or “we will use this as a learning experience to improve services in the future”.  Well I’m sorry Devon Partnership Trust, but I’m done with Jess being the Trust’s learning experience! And what makes it so much worse is that they don’t really seem to learn from it anyway – I’ve been saying the same things to them for 2 years, have worked with them to try and make a difference, but nothing changes. So I feel I have little choice but to escalate our concerns through other channels.

Last week, I had just 20 minutes with my MP to outline the catalogue of disasters in Jess’s ‘care’ under DPT over a 2 year period, and the impact these have had on her and on us as a family.  He has taken some action points from our meeting which I will outline later, but for now I want to share the points I raised with him.  I know I have written about some of this before, but it feels important to do so again …

Almost 18 months ago I wrote a letter to Mr Parish, along with letters to the Prime Minister, the Secretary of State for Health, and a number of other Ministers, on the issue of Out of Area Placements, when Jess was sent to a psychiatric unit in Harrow in West London in February 2018.  Jess ended up in a distressing limbo situation for months, where the hospital in Harrow refused to offer her any treatment on the basis she would quickly be brought back (repatriated) to a unit in Devon, and DPT telling us there was no possibility of repatriation due to there being no beds available.  At the time, the general response I received from those MPs and Ministers was the same, quoting the ‘party line’: that the Government pledged to eliminate inappropriate out of area placements by 2020/21 as part of the Five Year Forward View to improve mental health services.  18 months on and not only are Out of Area Placements (OAPs) still a reality, they have actually increased!

In 2018/19, £99,683,000 was spent on out of area placements provided by private companies (see previous blog: Out of area mental health placements on the rise), up from £77,324,720 in 2017/18 – a rise of over 22%.  The latest figures show that the number of inappropriate out of area placement days from December 2018 to February 2019 increased by 6%, compared with the same period in 2017-18.  Over half of these OAP days came from just 7 Trusts across England, with Devon Partnership Trust having the highest number of OAP days in the country – a shocking 5715 days in just 3 months, almost 10% of the national total!  This is in contrast to other Trusts who have achieved the Government target, and no longer send patients out of area … so it can be done.

For those of us living in Devon, this is an extremely disturbing statistic, and shows the scale of the problem, and how many people are being impacted by being sent out of area.  According to a DevonLive article, 373 people were hospitalised outside Devon in 2018, up on previous years.  And if we’re looking at impact, we must also look beyond the devastating impact on the patient themselves, to parents, carers, families and friends.  I will come back to one aspect of that later.

The scale of the OAP situation is bad enough in and of itself, but what people also need to understand is that the standard of care being offered by private providers who are capitalising on this bed shortage (eg. Cygnet Healthcare), is frequently falling short, and is not adequately monitored by the Trusts commissioning those beds.  As a result, patients’ lives are being put at risk.  Care Quality Commission (CQC) inspectors have found 28 privately run mental health units to be “inadequate” in the past three years, and it has rated 16 independently run mental health units as inadequate so far in this year alone.  Sadly, we have had first hand experience of this now on more than one occasion.

Just over a week ago, Jess was finally moved to her long-awaited personality disorder inpatient placement.  Of course, this has been a tortuous and chaotic process, with a sudden last minute change of plan made by DPT without discussion or consultation that threw us all, and which resulted in Jess being sent somewhere entirely different to what had already been arranged and planned for (a move to another placement was in the process of being finalised), overriding Jess’s stated preference to be in a unit closer to home and family.  This in itself is bad enough, but to then discover she has been sent to yet another Cygnet Hospital (in Ealing, West London this time) that the CQC has rated as ‘inadequate’ in an inspection report published just a week before DPT made this decision, is a shocking reality.  Within the last couple of months, a woman tragically took her own life on the ward where Jess now is, yet nobody from DPT sought to offer us any reassurance that steps have been taken to review procedures or improve safety as a consequence.  In fact, whilst I know they were aware of the death, it would seem they were unaware of the report or that the hospital had received this rating. When I raised concerns with them about their decision to send Jess there in the light of this report, I received this response: “The Trust does not usually consider working with services which have been CQC rated as inadequate, and it is unfortunate that the CQC report was only made available when it was. The ward Jess is on however was rated as ‘requires improvement'”.  Oh, well that’s fine then, silly me for being concerned!  And obviously, please don’t worry about offering any sort of apology for this oversight, or any distress caused!!  Given DPT previously told me they carry out due diligence and quality assurance checks when selecting out of area placements, it would seem that they failed yet again to put patient safety first, and we now have to hope that standards have been improved and ‘lessons learned’. In the absence of any communication from DPT on the matter, we have since contacted the CQC directly to satisfy ourselves that action is being taken to make the improvements needed to bring care back to an acceptable level, but is this really what parents and families should be expected to do to ensure their loved ones are safe?

I want to stress that, in general terms, what I am talking about here is a systemic failure of mental health services at an organisational level, rather than pointing the figure at any individuals working within them, many of whom – particularly those frontline staff working in the community and on inpatient wards – do an outstanding job in incredibly difficult circumstances. The system fails its staff too, and they deserve better, just as the patients do!

There is currently a crisis in recruiting and retaining staff in psychiatric inpatient units – an inherently stressful and challenging environment – due to poor training, low wages, lack of supervision and support.  As a result, units are increasingly relying on agency staff, and it is recognised that this is lowering the standard of care and compromising patient safety.  Jess has been involved in three life-threatening incidents in the last 6 months, all of which resulted from agency staff failing to make appropriate checks, and all of which are now subject to Root Cause Analysis* investigations.  One incident resulted in the CQC closing down the ward due to serious safety concerns, requiring Jess to then be moved from Cygnet Hospital Coventry to Cygnet Hospital Beckton.  Across the country, the CQC are reducing bed numbers on wards to redress the balance of permanent to agency staff in order to maintain standards, which is exacerbating the inpatient bed shortage (see previous blog: National shortage of psychiatric inpatient beds) and putting further pressure on a system which is already breaking apart.  When we also consider that out of area placements are known to reduce recovery rates and prolong inpatient admissions, we can see how the system is caught in a terrible downward spiral.

A final point I raised with Mr Parish was about an anomaly in the Universal Credit (UC) system that has impacted me as a carer.  Over the past year, I have had to reduce my work hours in the light of everything that has been happening, and have had to endure the UC system as a consequence (more on than another time!).  Of course, as per the ‘rules’ of the benefits system, since Jess went back into hospital I have been unable to claim Carers Allowance, nor the higher rate of UC available to carers, even though my caring role has continued.  In addition, in sending Jess out of area this has added a further challenge – to visit her in London, even for an hour or two, takes a full day, plus the associated cost of travel, food and anything else needed for a 10-12 hour round trip.

Now I don’t begrudge doing this at all – I want to see Jess as often as I can, I miss her and enjoy seeing her, and it’s hard on both of us that I can’t get to visit more frequently.  For the past 6 months Jess has been hospitalised out of area, I have made the journey to see her every week or two, and I will continue to do so.  Imagine then my disbelief to discover that if Jess was in prison, I could get financial assistance for travel costs to visit her, but because she is hospitalised out of area in a psychiatric unit I am not entitled to any support whatsoever!  Jess’s current placement will be for around another year, so by the time she finally gets to leave, she will have been out of area for around 18-20 months, longer than many prison sentences.  How is this fair?  She’s done nothing wrong, yet we are given less support to stay connected than if she was a convicted criminal!  When I queried this with a person at the UC office, they went off to ask questions of their manager and came back rather embarrassed to confirm that this indeed is the current situation, and that it wasn’t right but there was no way to challenge this other than raising it with my MP.  Which I have now done …

It is a shocking indictment of how those impacted by mental health issues are prejudiced against by the system.  Not just in terms of the inadequate care they can expect to receive, but also in how they and those around them are supported to manage the consequences.  The system doesn’t hesitate to expect parents and carers to pick up the pieces left behind by service failings; it’ll send people hundreds of miles from home and expect us to play an active role in supporting our loved ones, and it’ll discharge people back home the minute they possibly can without appropriate support, so setting people up to fail and begin this whole terrible cycle all over again …

So, as a result of our meeting, Mr Parish has said that he will do the following:

1. write a letter to all the other MPs in Devon to make them aware of the Out of Area Placement situation in Devon, to (hopefully) raise a more collective voice from across the county to Cabinet Ministers
2. draft a letter for me to check to Cabinet Ministers to raise the matter of OAPs, and the crisis in Devon
3. draft a letter to DPT for me to check to ask what steps they are taking to reduce OAPs ( I know what they’ll say, and it isn’t enough and they need to be challenged on this)
4. write to the Minister for Work & Pensions to flag up the anomaly in the Universal Credit system which is penalising carers of people hospitalised out of area

I know it may all come to nothing, but I have to keep trying.  And if enough people add their voice to all this, then maybe … just maybe … in the end something will change.

 

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*Root cause analysis (RCA) was developed for the health services to promote a systematic approach to the investigation of serious incidents. NHS trusts have adopted the RCA process to investigate serious incidents that result in moderate, severe harm or death.

‘Drowning’ – a very personal poem (3)

3. What is wrong with mental health services

‘Drowning’ – a very personal poem

This is a slight departure from my usual blogs, but still falls within my ‘What is wrong with mental health services’ series.  It’s a bit of a rant, but mainly I’m sharing a poem which I have written in response to everything that is going on right now.  I’ve called the poem ‘Drowning’, with a sub-title ‘An ode to mental health services in general, and Devon Partnership Trust in particular’.  This probably gives you some sense of how I’m feeling …

The last few months, and particularly the last few weeks, have been surreal in the worst possible way.  I cannot yet find words for all the things that have happened and all the things that have gone wrong, the false promises, the giving and taking away of hope, the moving of goalposts, and failures to provide appropriate care and support for Jess, or to act in accordance with her care plan.  We are seeing the consequences of an under-funded, under-resourced and fragmented system which is utterly broken.  Errors made within services too reliant on agency staff, the seeming inability of different parts of the system to communicate between themselves or with those patients and families caught up in it, and a whole system which seems to have lost sight of why it exists at all – to help those impacted by mental illness to get their lives back, to promote recovery and provide support.  A system that has lost its humanity, and lacks compassion and empathy.  When this happens, we surely know that a system is no longer fit for purpose.

Over the past 2 years, I have written a number of poems to try to process my thoughts, to find words for how I’m feeling, to say the unsayable.  Rarely do I share these, but I wanted to share this, because right now this is how I feel.  My dealings with mental health services in general, and Devon Partnership Trust in particular, have often left me speechless, bewildered, bruised and tearing my hair out with frustration.  The system is crazy-making, and at times I actually feel I am going mad.  My mistake is trying to make sense of what is happening when there is no sense to be made of it!  It is beyond belief.

Our mental health system is abusive.  It fails to support those it purports to be caring for.  Not just once or twice, here and there, in isolation.  But at every turn, across the system, with hundreds – probably thousands – of people.   Right now the only person I care about is Jess, and getting her out of this mess that mental health services have created – an intractable, impenetrable, chaotic mess.  A mess which is making Jess worse every day she is forced to endure this reality.  Stuck where she shouldn’t be, in an inappropriate inpatient environment, held in contravention of the “least restrictive environment” tenet of the Mental Health Act.  Devon Partnership have repeatedly, and are currently failing in their duty of care to Jess.  Despite agreement at senior level within the Trust, and between all the groups of clinicians involved in Jess’s care (and even some that aren’t!), she is still – 4 months on – being held on a PICU in London (see previous blog).  She has failed to be stepped down to an acute ward or moved to the specialist facility she has been waiting for for months on end, failed to be repatriated to Devon despite everyone agreeing this is vital to Jess’s mental wellbeing.  Failed again and again and again …

So for now, I’m simply sharing my poem with you.  Later I hope I can provide some context to these words, and what has been happening.  What I do know is however awful I feel, and however much I feel like I’m drowning, it is incomparable to what Jess is going through …

 

Drowning
(An ode to mental health services in general, and Devon Partnership Trust in particular)
A mother’s battle for justice for her daughter, trapped in a sick and broken mental health system that has utterly failed in its duty of care

I am lost, though I don’t know how it happened.
One minute I could see the shore,
I knew where I was headed and was within reach of home.
Of course, there’s been constant waves –
Monstrous peaks and troughs knocking me to the floor –
But there have been waves for so long
I’ve got used to them crashing over me.

But now there is this silence
And a menacing fog has wrapped itself around me.
Opaque, suffocating, disorienting,
It’s grey shroud swallowing sound and colour, place and time.
A vast pallor that distorts reality, always shifting,
Ever deepening, until all features, all points of reference
Are utterly hidden and lost to sight.
I am adrift and alone in this obscurity.
And I am afraid.

Icy fingers are locked around my throat
And twisting their way deep inside me to steal my voice.
Fleshless hands cover my mouth and unseen arms drag me down.
I am drowning.
No-one is coming, for it is those who have the power to save
Who have become my tormentors.
Once humans who lost their humanity, now spectres
Cruelly indifferent to the suffering of others.
They have become the obliterators, the destroyers of lives.

Choking and stumbling I try to rise,
To free myself from their steely grip.
But they are too many, omnipresent and powerful,
And my eyes are blinded by sheets of tears and this vile fog,
A fog they create to shield themselves.
Only their eyes can penetrate the impenetrable.
What confuses and bewilders others is their protection
And those touched by it are doomed to suffer helplessly.
Without compassion, what hope is there of mercy?

I am exhausted by this battle.
The fight is leaving me.

I am sinking …

          I am drowning …

                         I am lost.

 

 

National shortage of psychiatric inpatient beds (2)

2. What is wrong with mental health services

National shortage of psychiatric inpatient beds

POSSIBLE TRIGGER WARNING. This blog contains some references to suicide and self-harm

This is a story told backwards, But in the spirit of “starting where we are” mentioned in my previous blog, I want to share about the situation we currently find ourselves in – a farcical game of musical beds, which is having a profoundly damaging impact on Jess. But this isn’t just Jess’s story. There are thousands of people across the country who are impacted by the current psychiatric inpatient bed shortage, and I want to give them, as well as Jess, a voice.

It is a complex story, which requires a bit of explanation about the structure of mental health inpatient services for this, and subsequent blogs to make any sense. So bear with me while I attempt to provide some context …

Within adult mental health services, there are acute psychiatric hospitals or wards for men and women who are experiencing an acute episode of mental illness which requires a hospital admission. By this I mean that a person’s current mental state puts either them or others at risk, and they need a period of hospitalisation to (in theory) re-stabilise, to sort out medication or (in theory) receive an appropriate intervention to help that person back to wellness. In my experience (and many others), the reality of acute inpatient services is quite different, but more of that another time. Service users admitted to acute wards may be informal (voluntary) or detained under the Mental Health Act (sectioned), and so have no choice about whether they are there or not, since the Act allows people to be treated and hospitalised without their consent.

These are general psychiatric wards, which means that patients with the full spectrum of mental health issues find themselves on a ward together – people with depression, severe anxiety, psychosis, schizophrenia, personality disorders, bipolar, all of which have very different clinical presentations, but which are sadly not differentiated in this environment, and therefore patients’ needs aren’t differentiated either. It’s a bit like mixing cancer patients with people needing hip replacements or those who’ve had a heart attack, then adding in people with broken limbs and all the mums and babies from a maternity ward! And yes, before you say it, it is that ridiculous!

Clearly all these groups of people have very specific and different requirements, and rightly receive the individualised treatment and care they need. We don’t lump everyone with physical healthcare needs in together, yet we do this for people with mental health issues. And despite what others might think, people with ‘mental illness’ aren’t all the same and don’t necessarily have the same care needs. They require, and should be entitled to receive, the same person-centred (or at least condition-centred) approach that those with physical health issues receive.

Anyway, I digress slightly … Back to explaining the inpatient system.

The next step up from an acute ward is the Psychiatric Intensive Care Unit, or PICU. PICUs provide mental health care for people whose acute distress, risk of suicide or challenging behaviour needs a secure environment beyond that which can normally be provided on an acute psychiatric ward. So, PICUs are for those who are most acutely mentally unwell, in much the same way as ICUs (Intensive Care Units) in general hospitals are for those who are most acutely physically unwell. But that is where the similarity ends.

PICUs are highly volatile, unpredictable, noisy and distressing places. The recommendation is that admissions to PICUs should be no longer than a few weeks, and the National Association of Psychiatric Intensive Care Units (NAPICU), in their National Minimum Standards for Psychiatric Intensive Care in General Adult Services states that “the length of stay will be kept to a minimum, but not normally exceeding 6-8 weeks”, after which the expectation is that the patient would return to an acute unit once their risk decreases. It’s logical that this would happen, in the same way that people would be moved out of an ICU and onto an appropriate medical ward to continue their recovery. It’s the obvious thing to do. But Jess has been on PICU for the past 3 1/2 months, firstly in Coventry and now in East London, both some 4 hours away from family, friends, home and everything she loves.

And here is the problem.

In reality, once people are escalated to a PICU it is hard for them to return to an acute ward because of the chronic shortage of psychiatric inpatient beds; a nation-wide problem, but one which is particularly bad here in Devon, where there are only two-thirds of the required number of beds, meaning more people have to be hospitalised out-of-area (see previous blog: Out of Area Mental Health Placements). Because of this shortage, priority for acute ward beds is given to people coming from the community or Place of Safety (POS) who require an admission, rather than stepping-down those further up the system who at least have a bed. This means that people have to remain on a PICU much longer than stated in the recommendations, beyond a point which is either helpful or conducive to that person’s recovery. In other words, it becomes counter-productive and actually leads to increased mental distress, escalation of issues, copy-cat or learned behaviours, and an increased sense of powerlessness, frustration and hopelessness. It becomes detrimental, and actually begins to increase their level of risk. To put it bluntly, it makes them worse!

Bear in mind what I have said about why people are moved to a PICU, about the sorts of behaviours that will be being exhibited, the chaos and constant noise, day and night. Alarms going off, violence, shouting. Now imagine yourself in a confined ward space, surrounded by 12-18 other people in heightened and constant states of distress, often displaying self-injurious and suicidal behaviours, their mental pain palpable. The option to leave isn’t available to you – PICUs are locked wards, and most people there will be detained under the Mental Health Act. You have your own room, but you may or may not be allowed to be in it, depending on your level of risk, and anyway, you can’t close the door so the noise and chaos follows you. You don’t have any of the comforts of home – even the simplest of things like a soft blanket to snuggle under, your own duvet for comfort, no Netflix for distraction, nothing to occupy you; no chance to get outside and go for a walk, to be in nature with all the benefits that this is known to bring to our mental wellbeing. You can’t take yourself away from it, to have time out, quiet time. You can’t take the dog for a walk or stroke the cat to calm and soothe yourself, and if you’re miles from home, then visits from family and friends can be few and far between. It is a suffocatingly restrictive environment, from which there is no respite.

I could say so much more about this, but enough for now. Hopefully I’ve given just a hint of what being in this environment might be like.

And of course, there are times when being on a PICU is entirely necessary and appropriate. They are designed to provide a short, sharp and intensive intervention before a person’s mental state is stabilised and they are stepped back down to an acute ward, and the NAPICU best practice guidance for length of stay is there for good reason. The impact of being stuck in a PICU environment when you’ve been told you no longer need to be there should not be underestimated. I leave these places feeling claustrophobic and panicky after just a couple of hours. I cannot imagine how it feels to be trapped in this system and be unable to leave, nor to be able to influence or have any say or control over what happens to you or decisions that are made about you. These environments strip people of their identity, remove all sense of personal agency and choice, and isolate people from everything they know and love, particularly for those who find themselves out-of-area, as Jess is.

Jess is now entering her 15th week on a PICU, having been moved from an acute ward in Exeter when her risk increased and they were unable to keep her safe, to a PICU in Coventry on 31 May, then on to another PICU in East London on 6 August when the ward in Coventry was closed down by the CQC (Care Quality Commission). At least 10 weeks ago she was told by the Consultant Psychiatrist that she no longer needed to be on a PICU, and that her risk had reduced to a level which could be managed on an acute ward. The problem was that at that time there were no available beds in acute wards anywhere in the country! And so Jess has remained on a PICU despite the recommendations of her clinical team, and despite this no longer being in her best interests, unable to step-down to an acute ward or return to Devon to be near her family. She is stranded in an alien environment which I believe is enough to make even the most mentally healthy person struggle, and the impact on Jess has been devastating, and utterly heartbreaking to witness. As she says, “It feels like I’m being walked over by the people who are supposed to be helping me to walk”.

She is stuck, and the system is failing her in the worst possible way, and nobody seems to be able to resolve it, not even those working at a senior level within Devon Partnership Trust (DPT), who provide mental health services here in Devon. It is frightening to see how easy it is for people to be completely consumed by the mental health system, and I am fighting so hard to get Jess out of this mess, fighting a system that it utterly broken and, as one member of DPT’s core management team said to me, “not fit for purpose”!

As ever, there is so much to say that I didn’t even start writing here about what I intended to say. But enough for now, I will continue in my next blog …

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The image for this blog is from original artwork by Jess, as she is documenting her mental health journey through art. Follow her on Instagram here

Out-of-area mental health placements on the rise (1)

1. What is wrong with Mental Health Services:

Out-of-area mental health placements on the rise

For some time, I have wanted to write a series of blogs focusing on my experiences of adult inpatient services from the perspective of a parent/carer – in my case, a parent of a child with severe mental health issues, which has meant my daughter has spent 15 of the last 20 months in a number of different psychiatric inpatient units, in various parts of the country.  I say child, but Jess is almost 26, but she is – and always will be – my child.

The problem is with wanting to write about my experiences of what is wrong with the adult mental health inpatient system is that there is so much, I simply don’t know where to start.  Repeatedly, I have sat down to write, but as I start to think about what I want to say, a familiar sense of overwhelm creeps in, as one thought leads to another and another and another, and it all feels too big, too much to try and explain. Everything is linked to everything else, and it is so hard to unpick it and organise it into any sort of logical order that would allow others to follow the threads.

But today, I have been so impacted by my experience that I’ve decided I just have to start, to try.  And maybe what I share won’t be logical, and maybe it won’t all make sense, but then I’ve realised the system I’m battling isn’t logical, and it certainly doesn’t make sense, so perhaps it would be impossible to present it in this way.  So, these blogs will form a series entitled “What is wrong with mental health services”, but they could just as easily be called “You couldn’t make this sh*t up!” – maybe that should be the sub-heading?!

Anyway, taking inspiration from the great Arthur Ashe’s quote, I just have to start where I am …

“Start where you are.  Use what you have.  Do what you can” – Arthur Ashe

I’ve decided to try and break our story down into pieces in the hope it will become more manageable. If I try to think about ‘the whole’ it is too big, and I feel myself shutting down to protect myself from the emotions it brings up in me, the rising panic and frustration, the sadness and grief that my daughter is stuck in this dysfunctional and damaging system.  As I write, the tears come and I feel the pull to do anything other than this – wash up a few plates, dead head a spent flower I can see from where I’m sitting, make a cup of tea, play yet another game on my iPad, scroll through Facebook …. you get the picture!  But for Jess’s sake, and the sake of thousands of others caught up in this broken system, the truth of what is happening, and the simple facts should be told.

Today I read an article which really hit home, and brought up such feelings of anger and sadness that it has prompted me to start to tell our story.  The Guardian article, ‘NHS bill for private out-of-area mental health care rises to £100m’ highlights the plight of people like Jess who are hospitalised hundreds of miles from home, cutting them off from the vital support of their friends and family; a practice which NHS ‘big wigs’ have acknowledged actually reduces a person’s chances of recovery.  This fact was admitted to me first-hand by the Chief Executive of Devon Partnership Trust (our local mental health Trust), Melanie Walker, in a meeting I had with her more than 14 months ago, following a disastrous out-of-area placement Jess endured from February to May 2018 in London.  And yet despite that, Jess has once again found herself hospitalised out-of-area since May this year, firstly in Coventry and now in London, despite our home being in Devon.

For those who have no experience of the mental health inpatient system, you could be forgiven for thinking that private hospitalisation sounds like something of a luxury.  Indeed, most of our experience of private healthcare is for physical conditions, which for the most part is something enjoyed by those fortunate enough to be able to afford it, or who have a job where this perk is part of their employment package.  In mental health care it isn’t the same, simply because this isn’t a matter of choice.

Private providers, such as Cygnet Healthcare and the Priory Group, have capitalised on the lack of mental health inpatient beds provided by the NHS and set up private hospitals across the country, which now ‘mop up’ the overflow of NHS patients requiring inpatient care for their mental health, at huge cost.  I won’t pretend to understand the mechanism by which this system ‘works’ (hmm ??), or the commissioning process that sees CCGs (Clinical Commissioning Groups) across the country buying in these private beds, but what I do understand is the fall out from it, and the devastating impact it has on individuals and families.

The majority of people who are inpatient in psychiatric hospitals are detained (or ‘sectioned’) under the Mental Health Act, and as such have very little, if any, say in what happens to them, and in my experience, none whatsoever about where in the country they may be sent for care.  This decision seems to be entirely dependent on where a bed is available, rather than any consideration about what might be in the best interests of the patient*, and often sees people hospitalised many hundreds of miles from home for extended periods of time.  This in itself would be bad enough, but the manner in which this is often done – no consultation, discussion, warning, planning (I’ll say more about this in another blog) – adds considerable upset and trauma to people who are, by the very nature of their illness, struggling to manage feelings and emotions, and in a heightened state of distress.

In sending people away from loved ones and everything that is familiar to them, we do the opposite of what we do for people experiencing physical health issues.  A good friend of mine recently told me about her son-in-law having been taken to hospital after he collapsed while he was working in London.  Having undergone thorough assessment, checks and scans, and been stabilised, after a few days he was moved to a hospital near his home town of Southampton to continue his rehabilitation and recovery, so that his family could easily visit him and support him in that process, and to reduce the stress on everyone involved.  Whilst I was delighted for him and his family, it hurt so much.  While he immediately got appropriate care and treatment, Jess continues to be moved around the country like a badly-addressed parcel, going from one sorting office to the next, and after 20 months, still waiting for the right treatment.  In mental health services, care like this is a distant dream – the stuff of fantasies!

Despite Government pledges to end out-of-area care in mental health by 2020/21, this looks increasingly unlikely to happen.  More unsubstantiated rhetoric! (that’s a polite way of saying “b***ocks”)  In fact, more is now being spent on out-of-area placements than ever, rising over £20m in the past year to £100m!  When, last year, I raised the issue of out-of-area placements with my MP, Neil Parish, and with various Ministers right up to the Prime Minister, I was fobbed off by this pledge with no attempt whatsoever to acknowledge the immediate situation we found ourselves in (more of that later).  But I will now be raising it again, since there is clearly no evidence that any improvements are being made in this area – quite the opposite in fact – and lives are continuing to be destroyed by this practice.

More to follow …

 

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*in my experience it is impossible to find a term for someone receiving services from a mental health trust that everyone is happy with.  Whether patient, service user, client, or another variant, there will be people who object and are offended by it.  In writing, I may use these terms interchangeably and no offence is intended.  However, in my opinion we can get too hung up on ‘getting it right’ and tie ourselves in knots in the process.  In so doing, we run the risk of not saying anything at all.

 

 

 

 

Get the picture? The meaning behind an image

I have recently set up a new project, Transformative Creativity, which uses art and the creative process for wellbeing. I wanted to say a little about the image I have chosen to represent Transformative Creativity, which is very personal to me and holds a special significance and symbolism, so much so that it is tattooed on the inside of my left wrist.

When I started this project, it seemed to fit so well with what I’ve set out to achieve that it leapt out at me as an obvious choice. The image is probably clear in what it represents, but just in case it’s not, it is a dragonfly and lotus flower combined.

Both the lotus flower and the dragonfly carry important symbolic meaning in many cultures around the globe, and I wanted to share a few of my thoughts on this image …

The lotus flower

When we see a lotus flower (or its cousin, the water lily) floating on the surface of a pond, it’s easy to forget how it started life and the journey it has taken to get there.

The lotus flower is resilient and has been found in waters across the globe since before the Ice Age, when most plants in the northern hemisphere became extinct. As plants, they are very adaptive, resistant to the scorching summer sun and able to survive even under ice, as long as their roots remain in the mud at the bottom of ponds, where they start their lives. So the flower bud rises out of the mud, through the murky water, and on emerging at the surface, blooms, its flowers untouched by the mud, each petal clean, pure and vibrant.

The lotus flower then symbolises our own struggles and difficulties, reminding us to persevere through everything that is painful and challenging in life. For me, the lotus is a reminder that we too can grow through dark times, and can overcome whatever life throws at us, because there is something inside us that others can’t touch; a life force that can find a way to grow again, even in the toughest of circumstances.

“Be like a lotus. Let the beauty of your heart speak. Be grateful to the mud, water, air and the light” – Dr Amit Ray

The dragonfly

Dragonflies have been around for 300 million years, making them one of the oldest species of insects in the world. Like the lotus, the dragonfly emerges from the mud and waters of the pond. Eggs hatch into nymphs that live in ponds and marshes, which go through a process of metamorphosis over several years, until it emerges from the water, when its skin (or exoskeleton) splits open and the adult dragonfly emerges. Once the wings have hardened, it takes to the air as the familiar brightly iridescent creature that I find endlessly fascinating, as it darts and hovers, and dances above the water.

But the dragonfly flies for only a fraction of its life, and this symbolises the virtue of living in the moment, and living life to the fullest. When we live in the moment, we are more aware of who we are, what we want (and don’t want) and where we headed. Living in the moment means we can make more informed, healthy choices for our lives, and make the most of the time we have.

Perhaps then, given its life cycle, it is not surprising that in almost every part of the world, the dragonfly symbolises change, transformation, adaptability and self-realisation. It is also seen as a symbol of happiness, independence, new beginnings and hope.

“It’s never too late to be what you might have been” – George Eliot

I got my tattoo shortly before my 50th birthday, and not long after I separated from my husband, lost a much-loved home, my youngest flew the nest, and I had a hysterectomy. So much loss, sadness and change – so much to grieve and to adapt to. It marked the beginning of a significant period of transformation in my life, one which continues to this day, as I continue to grow my wings. With the lotus and dragonfly’s potent symbolism, seeing this image on my wrist reminds me of my inner strength, resilience and my ability to rise out of the mud and allow my colours to shine. It’s an ongoing and forever journey, a work in progress, as we all are.

Taking part in creative activities is known to have a positive impact on people’s mental health, but as adults, with our busy lives, we can lose touch with opportunities to get creative, and we can forget the value it brings to our lives. Through Transformative Creativity, my aim is to reconnect adults to their creativity through fun and relaxed workshops that focus on the process of creating, as for me much of the therapeutic benefit is in the ‘doing’, not just the end result.

Creativity encourages self-expression – a way to create something from personal feelings and experiences. It relieves stress, increases confidence in our instincts and helps improve our problem-solving skills. As adults, we often censor our creativity for fear of getting it wrong, of not being good enough, and of being judged by others, which in turn can lead to us judging ourselves, and to self-doubt. And if we censor our creativity because of those feelings, what other areas of our life are we also censoring or holding back on?

I want to use art, and the creative process, to bring some of the lotus and dragonfly energy into people’s lives, for them to find the confidence to create, transform and grow. The beauty of art can enhance our lives … and allow all of our colours to sparkle!

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To find out more about my forthcoming workshops, please click on the links below. Both events are bookable through Eventbrite:

CREATE YOUR OWN VISION BOARD
Saturday 21 September, 1.30-4.30pm – The Town Mill, Lyme Regis
£30

CREATE YOUR OWN PICTURE FROM SEA GLASS
Saturday 4 October, 2-4.30pm – The Town Mill, Lyme Regis
£35

Parent and Carer Involvement: Why it matters

Over the past few months I have been involved in delivering one module of an innovative CAMHS (Child & Adolescent Mental Health Services) Inpatient Training Programme, drawing on my experience to highlight the need (and benefits) of involving parents and carers in their young person’s care.

The University of Exeter has been delivering a range of CYP-IAPT ¹ programmes since 2011, and in 2018 they developed this training, which, in its first cohort has seen over 60 multi-disciplinary inpatient staff complete the programme, from four CAMHS Inpatient Units across the South West – from Support Workers and Mental Health Nurses through to Clinical Psychologists and Consultant Psychiatrists.

Last week’s celebratory event was an opportunity to review the impact of this training, hearing from each of the Inpatient Units the changes they have already, or are in the process of implementing as a result of this training.  There were also speakers from NHS England and the Royal College of Psychiatrists, talking about the long-term plans for children and young people’s mental health services in England, and about work being done to improve and standardise the quality of care received by young people admitted to inpatient care across the country.  I was invited to speak at the event, to share my thoughts about having been a tutor on this programme, and why it is so important to involve, and hear the voices of parents and carers.

The impact of the training has been extremely positive, with a range of improvements across the Units already having been put in place. But before I expand on this, since the majority of people will never have a child admitted to psychiatric inpatient care, I feel it is important to understand the context of these changes, and why they are so needed …

There is something utterly devastating about your child being admitted to an Inpatient Unit – a sense that you have failed as a parent.  Often parents are treated as though they are part of the problem, like they are in some way to blame for their child’s mental distress.  Judgements can come from all directions – from friends and family, from school, from health professionals and from society at large – and these judgements add to the weight of guilt, shame and self-blame that parents so often experience at such a moment.

An inpatient admission will generally come after many weeks or months of a young person experiencing deteriorating mental health problems, until they reach a point when they are no longer able to keep themselves safe, and are either voluntary admitted or sectioned under the Mental Health Act.  Young people will generally have been in contact with community mental health services, but this support may amount to no more than an hour or two a week, and for the rest of the time (in most cases) it will be parents who are the glue holding things together as best they can, trying to help, but often bewildered, frustrated and terrified as they watch their child fall apart.

There is nothing in the parenting manuals that tells you what to do when your child is impacted by mental health issues – we have no training, often little (if any) knowledge or experience of mental illness, and as such, can quickly find ourselves reeling in the face of such challenges.  It is heartbreaking, having tried everything you know or can think of, to find your child’s mental health worsening, and to feel helpless.  But that can be the reality.  And even though we, as parents, may know that an inpatient admission is the right, or only, course of action left, that in itself can be devastating.

I want to set the scene a little now.  Imagine this …

Your child has a life-threatening illness, and the decision is taken that they need to be hospitalised.  Inpatient beds are in desperately short supply, so the first challenge is to find somewhere they can go – this could be anywhere in the country, but if you’re lucky they will be admitted to a unit reasonably close to home.  In our case, this was a unit 70 miles away – for many, it could be hundreds of miles!  You drive your child to the hospital, which is likely to be in a town or city you don’t know, and walk into an alien environment which you know nothing about, trying to take in what is happening and to hold it together for the sake of your child, who is very likely to be even more scared and bewildered than you.  Often admissions happen urgently because a young person’s life is at risk, so it is probable that you will have received little, if any, information about what to expect, or had time to prepare for it.

The chances of you absorbing any information you have received at this point is questionable, as you struggle to deal with the idea that you are about to hand your child over to complete strangers, who don’t know you or your child, and who you have to trust will keep them safe and treat them kindly.  You leave them, with a couple of bags of clothes and a few personal belongings, in a building you’ve never seen before but which will become their home for many weeks or months, and which you are unable even to look around.  You don’t know where your child will eat dinner or where they will sleep, so you can’t even visualise them as the days pass; you don’t know who they are with or what will happen to them.  And then you have to drive away …

The child you have brought into this world, who you have loved and supported their whole life, is suddenly no longer in your care.  At a time when every instinct is to keep them close and cosset them to keep them safe, as you do when your child is ill or hurting, you find yourself having to do the exact opposite, and somehow accept that you are doing what is best for their wellbeing. And that you can’t fix them.

As if this scenario isn’t traumatic enough, it gets worse.  You quickly realise that your feelings about this unnatural break in the order of things – your natural parental concern – is of little interest within the inpatient system.  Your attempts to get information about your child clash with the intractable rules around consent, and can be met with irritation by staff who are often stressed, under pressure and under-resourced.  Your fears and worries seem to have no outlet, and your need to be heard often goes unmet.  Rather than seeking their advice and expert knowledge about their child, parents can rapidly find themselves side-lined, with no idea how to operate in their new role – wanting to still be involved in decisions about their child and their future, wanting to feel they have a part to play in their child’s recovery.  Fundamentally, wanting to help!

Because here’s the thing.  We may not be experts in mental illness from a clinical perspective, but we are experts in our children, and we are experts in how our child’s issues have impacted their lives, and our family’s lives.  With the system, and mental health professionals’ focus (rightly) on the young person, it is easy to forget that we, as parents, are not only attempting to cope with our child being seriously ill (often suicidal and/or locked in behaviours that pose a dangerous risk to their safety), and the trauma this can give rise to, but we are also likely to be juggling jobs, other children, partners, financial worries, responsibilities … lives.

In 2017, the Association for Young People’s Health (AYPH) published their survey, “There for you’: The role of parents in supporting young people with mental health problems” which found that the “parents of adolescents are the most unsupported of all groups of parents, and those who have teenagers with mental health problems seem to be particularly isolated.”  I believe this is especially true for parents of young people who are admitted to inpatient care.  So much stigma still exists around mental illness and its “causes”, and there is so little understanding in society in general, that parents can find it hard to open up about what has happened.  Added to that, the pointed questions over many months about what might have happened to your child to make them ill can compound the sense that you’re a “bad parent”, which now seems to have been proven by them having to be hospitalised.

At last week’s event, I heard it said on a number of occasions that one of the most valuable aspects of this training had been that it provided an opportunity for staff from the different inpatient units to network with their peers from other units, to share ideas and best practice.  With units spread thinly across the country, and often operating quite separately from other services, staff commented on feeling isolated in their work.  The learning from coming together in this way was fully acknowledged, and many expressed a wish for this to continue and felt it would help services to continue to make improvements.

And I completely agree. The support of our peers can help us in so many ways – a listening ear, mutual understanding, sharing skills and ideas, solving problems. The old adage, “a problem shared is a problem halved” is so very true, and to me sums up the value of peer support. Yet, I felt moved to point out to these professionals, parents feel very much the same, but rarely (if ever) is an opportunity provided for us to network with other parents, and as a result, our sense of isolation can be profound.

It is for this reason that in 2013 I set up The Project Parent & Carers Support Group, as part of a community-based early intervention service for young people.  I facilitated the group for five years, and in that time met many parents who had never spoken to another parent in their situation, and who shed tears of relief to realise they weren’t alone.  Every single one of the parents I met through that group, and those who still contact me, wanted nothing more than to help their child.  They shared common emotions of shame and blame, of helplessness and utter terror, grief and shock.  They often felt lost, and unsure which way to turn.  They experienced high levels of distress from feeling shut out of their child’s care, a fact borne out by the AYPH survey which shows that over 40% of parents “feel excluded by the agencies involved in helping their young person”.

Yet, it is my belief that parents can be an effective part of the solution, given the right help and support.  Parents are often the only consistent factor as young people move through the different parts of mental health services, from community to inpatient, and back to community through to discharge, or on to adult services.  Young people will likely see dozens of mental health professionals – psychiatrists, psychotherapists, family therapists, support workers, nurses, key workers, CPNs and so on.  In the course of accessing services a young person will be passed between different professionals, and they will come and go, as staff retention is generally poor within mental health services, but particularly at inpatient level.  Although an inpatient stay can last several months, ultimately a child will be discharged, usually back home to their parents, and on this basis alone it makes no sense to exclude them from their child’s recovery process.  Instead of being shut out, parents need to be given more practical support and advice to successfully navigate crises, to know how to help rather than exacerbate situations, and to know how best to manage and support a child at home.

In addition to feeling excluded from their care, parents also have the challenges of being able to visit their child on a regular basis. For young people who end up hospitalised “out of area”, this is compounded by the distance they are from their families, but even visiting a relatively “local” unit is fraught with difficulties. If parents are working or have other childcare commitments, finding the time – and the money – to travel can be hard.  When my daughter was admitted to inpatient care, I was undertaking a 150-mile round trip three times a week, and as I have said, I was fortunate that she was relatively close by!

But let’s say we have made it for our visit. On arrival, you are shown into a small, soulless room with bare walls and a few chairs, maybe a table … and nothing else. It will often be a room that is used for therapy, so young people can often have difficult associations with the space. The door is closed, and so begins the agonising attempt to normalise this interaction with your own child in this alien environment, and hold some sort of conversation — you, with your questions and fears and grief, coming together with a child who is seriously unwell, and who may be having a particularly tough day, be filled with their own anxieties and fears, and feeling the awkwardness of being stuck in a box with their parents and having to make conversation! Nothing to interact with, no books, no distractions, magazines, games, no comfy chairs, sofas, cushions – just a stark, unwelcoming space, and a whole load of discomfort, both physical and emotional. If you last half an hour, you’ve done well!  You may even get there only to find your child simply isn’t well enough to see you, and you just have to go away again.

So you see, at the end of the day, however good an inpatient unit is, and however caring, professional and kind-hearted the staff (and they generally are all of those things), an inpatient admission will always be traumatic for both the child and their family.  It is unavoidable!

Being part of this training has reinforced for me – yet again – the urgent need for early intervention and prevention support for young people.  Inpatient admission should be a last resort, to be avoided at all costs, and more intensive crisis support in the community needs to be put in place to ensure that inpatient admissions are only made when absolutely necessary, and for the shortest length of time possible.  But in the absence of there being any other alternative, that “last resort” admission has to happen!  Currently, the average length of a CAMHS admission in England is 74 days ², with the shortest being 10 and the longest being over 300 days (2016/17 data), at an average cost per CAMHS inpatient admission of £61,000 ³.  And this is just the financial cost to the NHS, before we even look at the social, emotional and economic impact an inpatient admission can have on a young person and their family, and the additional trauma that can result to both from being hundreds of miles apart.  A child is not only separated from their family, but also their friends, pets, school, hobbies and community.

Not only is early intervention support much cheaper to deliver, it has better outcomes for young people.  Young people do not leave an inpatient unit “fixed” – they will frequently still need considerable ongoing support from mental health services, and from parents and carers.  And it’s not just the child who would benefit from early intervention support, but we also need to be looking at early intervention and peer support for parents, stepping in to help them before they reach breaking point.  Without support, a parent’s mental health can also be impacted, requiring time off work and potentially requiring input from mental health professionals themselves to manage the resulting stress and trauma – the ripple effects of mental illness mean it is rarely just the person experiencing mental distress who is impacted, but the entire family. Parents can frequently find themselves supporting not only their child, but also managing the natural fears and anxieties of friends and other family members – siblings, grandparents, aunts and uncles.

But finally I feel like the penny may have started to drop!  NHS Trusts are beginning to implement the Triangle of Care model in a meaningful way, creating a working collaboration between those using services, professionals and carers that promotes safety, supports recovery and sustains wellbeing; and parent/carer involvement finally feels like it is moving past tokenistic gestures and tick-boxes, through to meaningful interaction and mutual respect.

I feel very proud to have been a tutor on this training programme, and to have had the opportunity to share my family’s experience of inpatient services, but also to be a voice for the thousands of other parent/carers who are out there, battling to be heard and be taken seriously in their child’s care.  What has been particularly gratifying, and which moved me to tears last week, was to hear the changes that the Inpatient Units involved in this training have already made, which they stated has been directly as a result of my input.

So, what has changed? Well, below I have listed the changes which have already taken place across the four units, but something bigger than all this has happened, and that is a change in attitude – an understanding of how it is for ‘us’, and a willingness to see parents as a resource and ally in a child’s recovery rather than the enemy. And as you read the points below, I hope that understanding the context for these changes demonstrates how important they are, both to parents and young people, and actually, ultimately to staff too …

New and/or updated Information Packs for parents and carers

Improved communication with parents and carers from the point of admission

Regular ‘Open Days’ for parents to be shown round the Unit, and/or online virtual tours

Improved family rooms for visits (with games, sofas, beanbags, things to do, etc)

Facilities for young people to make their parents a cup of tea/coffee on arrival for a visit

Parent and carer support groups at the Unit

Training/information sessions for parents around some of the challenges of mental distress (eg. self harm, how to manage behaviours)

I am blown away that all this has happened from just this one initial training programme, and I already know these changes will make such a difference to the parents and carers of young people admitted to these units. And what is even more exciting is that, due to the success of this training, it is to be repeated later this year in the South West, with more units getting involved, and it is also being rolled out in other parts of the country.  I hope this will mean that gradually this message will spread and parents will feel empowered to be part of the solution, and not alienated and isolated from their children at a time of crisis and need. There is still a long way to go, but this training is a positive step in the right direction.

Sadly, there will always be a need for inpatient units, and some young people will always end up needing this high level of help and support. But I will continue to fight for the voices of parents to be heard, and for greater investment in and the prioritising of early intervention services for young people, so that whenever and wherever possible, the trauma of inpatient admission can be avoided for as many young people and their families as possible; and that when and if it is needed, a young person’s stay in hospital is as short as possible, and as close to home as possible. More community support needs to be available for this to happen, and more needs to be done to challenge the stigma of mental illness, and to increase knowledge, understanding and awareness in parents, young people and the wider population. That way, we can all be part of the solution …

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Debbie is the Founder of The Project, a successful early intervention support network for young people affected by mental health issues, based in East Devon. Since opening in 2013, The Project has been nominated for and won awards, and been recognised as an example of best practice at Government level for its innovative and effective approach to supporting young people.  Debbie also facilitated a Parent & Carer Support Group for five years, and continues to provide support to parents of young people affected by mental illness.

Debbie has since gone on to set up The Project Training & Consultancy, a social enterprise providing mental health awareness training, as well as consultancy around early intervention support for young people, and parent and carer involvement.  The Project’s model has now been manualised, and has been successfully replicated in other areas in response to demand, so more young people can access the help and support they need, when they need it.

Debbie was awarded Inspirational Woman of the Year 2018 at the Venus Business Awards for Devon & Cornwall, and the Deputy Prime Minister’s Mental Health Hero Award in 2015. She has also been awarded a prestigious Fellowship from the Winston Churchill Memorial Trust, and will be travelling to Australia and Finland to carry out research into early intervention initiatives supporting young people in 2019/20.

For more information:

www.theproject-training.co.uk  |  e: info@theproject-training.co.uk  |  t: 07874 269233

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¹ CYP-IAPT: Children and Young People’s Improving Access to Psychological Therapies

² Report: International Comparisons of Mental Health Services for Children and Young People , 30 May 2018

³ Children’s Commissioner Briefing: Children’s Mental Healthcare in England, October 2017

Time for a new me … I’m changing my name!

A year ago today, I set off on my ‘Adventures with Daisy’, when I got on the ferry at Newhaven headed for France, at the start of my 1000 mile solo road trip in my camper van. It may sound a bit dramatic, but it is an adventure that changed me – in pushing the edges of my comfort zone, the trip allowed me to redefine myself and what I thought I was capable of doing alone; it make me braver, broadened my horizons, and taught me that travelling solo (with Eddie the dog, of course!) can be both exciting and rewarding. Looking back it is one of the best things I have ever done, just for me.

Today, I am about to start another journey of a very different kind; I’m at the beginning of a another new adventure that will redefine me. I am changing my name! I will no longer be Debbie Humberstone, but will, from now on, be Debbie Frances. Here’s why …

As many of you will know, coming up for 4 years ago, my marriage ended. This is not a place to air my dirty laundry, and I’m not going into the why, the how or the what of that event, but suffice to say, it was a sad and somewhat bitter time, that brought about many difficult life changes for me. What it also did was leave me with a name that, over time, has come to feel less like it belongs to me or that it is representative of who I now am or how I view myself. It is a hangover from a period of my life that has ended, and more and more, it has come to feel like an ill-fitting, second-hand overcoat that hides something of the ‘me’ underneath.

I’ve come to realise that names matter. They have meaning, and in some way, they define us. As women, we still routinely give up our family name when we get married – a practice which, in my opinion, is out-dated and unnecessary, but which somehow society still largely expects of us. We generally give up the name of the family we were born into, and take on the name of a whole new family – just like that, in a moment! We give up one identity and take on another that is given to us. We don’t usually choose it, we may not even like it; we take another overcoat and we put it on, and hope it fits.

And perhaps that’s fine when the marriage works, but what if it doesn’t? What about when a marriage ends? I have spoken to so many women who have been left with a name they can no longer relate to, and which can, in fact, hold many sad, difficult and traumatic memories.

Increasingly I have reflected on how this impacts on our sense of identity as women. If names have meaning, and in some way, reflect some aspect of who we are, then names are also important. I have reached a point in my life when I don’t want to be known by a name I was given because of my former marital status, I don’t want a name that belonged to someone else – I want a name that is mine, that I have chosen, and which represents who I am, and who I see myself to be. I don’t belong to anyone else – I am my own person!

I decided I wanted to change my name over a year ago, but the sticking point was that I didn’t know what I wanted to change it to. My children carry their dad’s name from my first marriage, so it would have been inappropriate to go back to that, and I have little connection to my maiden name. My parents split up when I was five, and I gave up my family name when I got married at the age of 24. So, none of the names I have been known by so far in my lifetime were right for me to go back to. What then?

A few months ago, I was sharing my dilemma with a friend. She asked me if I had a middle name, to which I replied, “yes, it’s Frances”. The friend, who has studied Native American culture, where names carry great importance, asked me what the name meant. Within their culture, names are considered sacred, and are given to represent a person’s characteristics or qualities, or are drawn from nature. It it is not uncommon for names to change or be added in response to achievements or accomplishments in that person’s life, so are hugely significant and deeply personal. In answering my friend’s question I replied that I had no idea what the name meant, nor why I had been given it. Having checked with my Mum, I now know that Frances was a name she and my Dad liked, but there was no other significance to it.

Before I share more about my name choice, it feels particularly synchronistic that I should be sharing this announcement today, a year on from my French adventure (part one!). I have a real love of France – I always have. When I go to France, I have a strong sense of coming home, a sense that I can’t quite explain but which is there nonetheless. I have said many times that France feels like my spiritual home, and my ultimate dream is to open a retreat centre in the French countryside. I have no idea whether this dream will ever become a reality, but that doesn’t make it any less real! We all need to dream, and the bigger the better if you ask me!

My solo travels in France showed me more about who I am, and what I can do. Despite being initially terrified about travelling alone in my van, I did it anyway, and in doing so, I discovered something about myself – that I am capable of so much more than I think, if I choose not to allow my fears to limit me. It gave me a freedom which I hadn’t experienced before, and an inner strength that has helped me through some tough times since. That may seem an over-the-top way to talk about my road trip, but in pushing back my boundaries then, it has given me the courage to step more fully into my life, and to live more in line with my intrinsic values. Changing my name feels an important part of this process.

Frances … it means “of France” and “free one”. When my friend looked up the meaning and told me, I laughed out loud, and then I was a little stunned. After months of wondering what name I could choose, and waiting for inspiration to strike, it turned out I didn’t need to go looking anywhere else – I already had the perfect name in me, which reflects both my dreams and how I see myself, and it fits like a glove. And so, my middle name has become my surname.

My official name change documents arrived yesterday, and have now been signed and witnessed. It felt like a big moment, signing my name for the first time, and it suddenly has become more real. In writing this blog, and sharing it with friends, colleagues and loved ones, I am making my decision public – I have taken off the old overcoat that no longer fits, and am beginning the adventure to a new me. Who knows where that will take me?!

So, goodbye Debbie Humberstone, and welcome Debbie Frances. I think that definitely deserves celebrating!