Mother whose anorexic daughter was placed 300 miles from home writes emotional letter to Jeremy Hunt

Exclusive: 'Would you in your powerful position as Health Secretary be able to get better care if this happened to one of your daughters?'

Rachel's daughter had to be placed in a clinic 300 miles away in Edinburgh, which she said felt like she was 'leaving her child in care'

A mother whose anorexic daughter was offered treatment 300 miles from home has written to Jeremy Hunt asking him what he would do if his child was in the same situation, in a letter published exclusively by The Independent.

Rachel, 48, from Nottingham, said she had been “tormented” with a sense of guilt and perpetual stress after spending three years battling to get adequate care for her teenager, who has been allocated to mental health units miles away from home on five different occasions during that time.

Her daughter, 18, who she doesn’t wish to name, has been put on numerous waiting lists despite being at the point where she was eating nothing. When Rachel's daughter was 17 the situation got so desperate that Rachel was forced to agree for her to be placed in a clinic 300 miles away in Edinburgh, which she said felt like she was “leaving her child in care”.

Now the mother of three has decided to confront the Health Secretary on the “uncertainty and fear” that she says mentally ill patients and their families are experiencing on a daily basis, accusing him of leaving people to fall victim to a system at “breaking point”.

“I’m fed up of keeping quiet. Fed up of my concerns not being listened to. Fed up of being failed by underfunded services,” she writes in a letter to Mr Hunt.

“Would you in your powerful position as Health Secretary be able to get better care if this happened to one of your daughters? Would you be listened to when you cried, begged and pleaded with NHS England to offer her a bed in the hospital that you knew and that had helped her before?

“When your pleas fell on deaf ears would you feel as desperate and powerless as we did but resign yourself to get on a plane and fly your daughter 300 miles from home?”

Rachel, whose daughter was first placed an hour’s drive from home in Birmingham, and later Cambridge, and then a plane journey away in Scotland, said the long waiting lists for child mental health units caused her daughter on a number of occasions to stop eating completely in a bid to be given higher priority.

Accusing the Health Secretary of “making ambitious claims but without the necessary investment in services,” she cites his promise to end out-of-area placements by 2021, which she says won’t be achievable because outpatient services are already struggling to prevent young people reaching “crisis point”.

She tells Mr Hunt he is "making the very important decisions which have affected all of us," and asks whether he can make a "solemn promise" to her family that no one else will have to endure what they have.

It is well-documented that mental health services for young people in the UK have declined in recent years. A major review by the Care Quality Commission (CQC) revealed that vulnerable children were facing “agonising waits” for treatment, often causing their mental health to deteriorate further.

The findings showed that even when children do access treatment, the services were not always adequate to respond to their needs, with more than a third (39 per cent) of specialist child and adolescent mental health services (CAMHS) across the UK currently requiring improvement.

Speaking to The Independent about the letter, which she has decided to write now that her daughter is home and in a more stable condition, Rachel described what it was like to send her child so far away.

“It feels like your child’s going into care, leaving them with people you’ve never met before. Handing them over when they’re so vulnerable. I sometimes sobbed all the way home. So many times I had to stop before I got on the motorway, just to cry,” she said.

“It was hard when she was all the way in Edinburgh because it would only be me who went to see her. It meant she didn’t see her sisters.”

She explained how her daughter was too ill to come home on Christmas Day, so she took some of her presents to the unit a few days before, but was forced to unwrap them in front of security, which she described as "awful".

“I can’t believe I survived it to be honest," Rachel added. "I sometimes get flashbacks. There was no continuity, constant changes in psychologists, no consistency between the different units. I took responsibility for it all. It was so difficult; it made me ill.”

A Department of Health spokesperson said: "Every child in crisis should get the support they need and it is absolutely wrong for anyone to have to travel hundreds of miles for care at a time when they need the support of friends and family the most.

"We are fully committed to ending the nightmare of inappropriate out of area placements for children by 2021 – that is why we are already undertaking probably the most widespread programme of mental health transformation in Europe, supported by a rigorous inspection regime and £1.4 billion more investment for children and young people's mental health by 2020.

“'We know there is much more to do and we will be responding to Rachel's letter promptly."

Rachel's letter in full:

I’m writing to you because I think you will remember me.

I’m the mum whose daughter had to travel 300 miles to Scotland to get the specialist care she needed. Mark Austin met you recently as part of the documentary ‘Wasting Away’. I decided to go on camera for this film because I’m fed up of keeping quiet. Fed up of my concerns not being listened to. Fed up of being failed by underfunded services. Fed up of seeing dedicated health professionals on their knees, unable to find time to eat lunch or use the toilet and crying with us because they know what’s happened to our family is wrong and they should be able to offer us so much more. And as for my daughter, well she’s been traumatised to be honest. Not only has she suffered the most horrendous mental illness but has been sent away from her family five times. Five times, she’s fallen victim to the ‘postcode lottery’ of care that Maddy Austin talked about in the film. My daughter sent you a message, did it get to you? She asked you ‘Why can’t I get the intensive support I need at home (as an outpatient) instead of having to travel 100’s of miles for treatment’?’ It’s such a basic request isn’t it? To be looked after at home in your community surrounded by those who love and care for you. This is the 21st century after all and we are the fifth richest country in the world. It’s really not fair is it and to be honest Mr Hunt I’ve often wondered have you ever tried to put yourself in our shoes? Have you ever wondered yourself..

What would you do?

Would you in your powerful position as health secretary be able to get better care if this happened to one of your daughters? Would you be listened to when you cried, begged and pleaded with NHS England to offer her a bed in the hospital that you knew and that had helped her before? When your pleas fell on deaf ears would you feel as desperate and powerless as we did but resign yourself to get on a plane and fly your daughter 300 miles from home?

To be honest Mr Hunt I’m tired of hearing you admit it’s not good enough and then go on to make ambitious claims but without the necessary investment in services. How will you honour your promise to end out of area placements by 2021 when in reality, in areas like ours, Child and Adolescent Mental Health Services (CAMHS) can’t offer enough outpatient support needed to prevent young people reaching crisis point. Preventing relapse and reducing the need for expensive hospital beds should be a priority shouldn’t it, yet the numbers requiring multiple admissions like my daughter will increase until you prioritise investment for them in the community. The National Institute for Health and Care Excellence (NICE) guidelines offer great guidance from a wide evidence base, yet much that is detailed there, including access to specific therapies, remains at best elusive and more often than not impossible to find. And what of those young people that present with trauma induced mental health problems? I have yet to find a therapy commissioned that will address such issues yet Cognitive Behavioural Therapy continues to be the sole intervention available. In our documentary you made a promise to name and shame the clinical commissioning groups (CCGs) but I fail to see what that will achieve. So please Mr Hunt tell me;

Why won’t you properly fund outpatient services and ensure that the money is ringfenced?

My daughter has been home now for over 4 months and because she’s turned 18 she has been abruptly transferred to adult services and thus begins the long and often difficult process of getting to know and trust new health care professionals. During her time under CAMHS she has received no continuity of care but instead been sent around the country and beyond to no fewer than 7 teams of professionals. You only need to read the NICE guidelines for the evidence of how appallingly detrimental that is to recovery. So tell me Mr Hunt;

Do you really think this acceptable and that parity of esteem can be a possibility when absence of continuity of care is a stark reality for so many?

No-one should have to endure what my daughter has, and have to face on a daily basis the uncertainty and fear that is a reality for all those in need of extra care from services for their mental health. I wish with all my heart that this wasn’t happening to so many others up and down the country and to those who maybe are not as lucky to have the supportive family I do. Because in spite of our strengths there have been times when the situation has had a profound effect on my own mental health and that of other family members. Because mental health affects all of us and a system at breaking point doesn’t just fail the sufferer but their family and society as a whole.

My daughter has gone through so much in the last five years which has been made so much worse by the failings of the neglected and underfunded mental health system. I am tormented on a daily basis with guilt and great sadness that I didn’t do enough to keep my daughter out on hospital. This is exacerbated by the fact that even when things have gone wrong not one person has ever offered her an apology. When she was sent to an inadequate unit in Cambridge no one said sorry. When she had to wait two months for an admission to a specialist unit, no one said sorry. Even when she was sent 300 miles away to another country no one took responsibility and said it wasn’t good enough.

Mr Hunt do you think you could hold up your hands and offer her an apology? It is you after all who has been overseeing the NHS system and who has made the very important decisions which have affected all of us. Do you think also that you could make a solemn promise to our family that no one else will have to endure what we have? If you made the decision to at least ringfence the funding that the CCGs receive, that would surely have a definite positive effect.

I would also be grateful if you’d reschedule my appointment with you. Do you remember we had it booked for May, with a junior member of your team, but it was cancelled due to the unexpected election? I understand from my MP Anna Soubry that you were pretty keen for us to share our expertise and ideas. Would you be good enough to honour this meeting yourself?

Thank you for taking the time to read this letter which I have shared openly. I look forward to hearing from you.

Rachel