“There is nothing in the parenting manuals that tells you what to do when your child is impacted by mental health issues”Debbie Frances
As part of the University of Exeter’s new CYP IAPT Inpatient CAMHS (Child & Adolescent Mental Health Services) Training Programme, trainees have been looking at the importance of parent and carer participation within Inpatient Units.
Debbie Frances has been supporting the first three cohorts of Inpatient Training. Debbie is 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 been writing a blog about her experiences and has kindly given permission for us to share a post with you…
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 …
¹ CYP-IAPT: Children and Young People’s Improving Access to Psychological Therapies
For more information:
To see more of Debbie’s blog posts visit her site – https://debfrances.wordpress.com/
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