Lily’s story

Lily’s mental health problems started early in life.  Home life was dominated by domestic abuse and alcoholism,  and without any real support she was prescribed valium at the young age of 13.  There had been an unsuccessful attempt at family therapy, but apart from that Lily remembers very unhappy, anxious days at school and frequent trips to the nurses office.

Things continued to be difficult through her teenage years, and culminated in a spell in hospital after contracting glandular fever. Years of poor health followed and several years later Lily was diagnosed with chronic ME and was barely able to get out of bed.

However the real crisis started eight years ago, when Lily’s partner committed suicide. Looking back Lily can barely remember much about the period that followed. “I was a real mess”.  At the time this was described by psychiatrists as an ‘abnormal grief reaction’ but what’s obvious to Lily now is that the sudden loss of her partner opened up traumas that she’d been living with since childhood. She was given a diagnosis of ‘mixed personality disorder (unstable traits)’, which she has never felt is right, but her view is that a diagnosis is simply a route to getting some support and an acknowledgement of her needs.

“Diagnosis without treatment is no help at all. I have a severe anxiety disorder. I’m locked into traumatic responses even for small, everyday experiences”.

For a while she was supported at home by the crisis team, and she was offered counselling but it wasn’t effective for her as it didn’t really address the underlying issues.

“The personal health budget was a godsend. I found out about it and asked my psychiatrist. I’d started to see a psychologist specialising in trauma therapy, and it was the first thing that actually started to make a difference but I was having to self fund and even at reduced rates it was unaffordable to someone not able to work”.

Lily was able to present her proposed personal health budget care plan to the panel of commissioners and medical professionals herself. Other people may have found this intimidating but Lily felt that it was an ‘alleluja moment’ to be listened to and taken seriously, and it seemed like an important part of the process for her.

As someone who had been living with mental health concerns for many years, Lily had already begun to formulate a support plan that was helping her to cope and stay well. She knew she needed trauma therapy that she couldn’t be referred to, she knew that periods of respite helped her cope with difficult times and visits to the osteopath manage the chronic pain she has due to stress in her body.

Lily has been managing her life and her health better, and while she believes she’s got a long journey to recovery ahead, she can see what issues are in need of treatment for learning to cope.

“Therapy can bring up as many problems as it solves, there can be very difficult issues to work through and that takes time. There have been some triggered crises and episodes of self harm, that have been dealt with extra intervention, using my health budget and the main aim is to avoid another full breakdown.

“I definitely don’t want to end up back in hospital. Apart from keeping you safe in crisis, there are no positive outcomes in a hospital stay”.

Mental health problems are often invisible. Lily is articulate, and takes care of her appearance so she feels sometimes that because she ‘looks ok’ her severe anxiety isn’t taken seriously. Previously she had fallen through the net. She doesn’t take any kind of medication, as that had never been effective for her, but the support plan that she has developed is helping to ‘bridge the gap’ between ending up in hospital or getting no support at all, which is how things felt previously. She feels that the NHS played ‘Russian Roulette’ up to the point of the personal health budget and trauma therapy.

“The NHS was happy to send me to therapy that wasn’t working, and paying for it, so surely it makes sense to find a way for me to get help that’s clearly making a difference?”

There are issues with the fact that her small social care budget goes into the same account as her personal health budget. There have been problems with funding from social care and this has been confusing and added to the stress. There are issues that could be improved, but on the whole she’s happy to be keeping out of crisis.

“After so many years living with mental health problems the personal health budget is the first thing that’s made me feel like I’m worth treating”.