Organisations and individuals have turning points, a point in their development often seen in retrospect as a key moment of change. For the NHS it could be argued it was the financial problems of 2005/2006 out of which came a determination to put quality at the heart of the NHS, the Darzi work, the attack on healthcare associated infections, the role of standards of clinical leadership, the publication of data and the very beginnings of thinking about a patient led NHS.
For me as an individual it was seeing a woman with a learning disability get out of a wheelchair and begin to crawl on her hands and knees up the steps to the office where she could receive her weekly spending money. How could it happen? How could the organisation I had just been appointed to let such a thing happen, but also how simply and quickly could it be put right (we had a ramp in place by the end of the day). Saying patients are at heart of what we do and making it happen are sometimes very different things, even in 1983.
I was reminded of all this during a recent visit to Mersey Care, the NHS trust responsible for providing mental health services, including Ashworth high secure hospital. I met a number of service users who all talked to me about turning points: the man who put a poster on the notice board asking for volunteers to become involved with the service user council; the service user who realised when a charge nurse put his arm around him and said “we are all here to help you”, that the staff really were. These examples had been genuinely life changing for these people.
For Ashworth hospital the Fallon report was its turning point and after many years of struggle you can see the benefits of genuinely changing to a culture with service users at the heart. Culture change is tough and long-term and Mersey Care has been working at it for many years. One member of staff explained it to me as: “when we started out I sat opposite service users and talked to them about what they needed, and that was good and helped me understand, but the real trick is to sit not opposite but beside them. In that way you work with them and see the world as they do.”
I saw lots of great things at the trust including a cellist from the Liverpool Philharmonic playing in the lounge on an older people’s ward engaging the patients, even an old gentleman who couldn’t hear. The remarkable 4D room for people with dementia, the enthusiastic young charge nurse on the male admission ward with a thousand ideas about how he would improve the service. Two things, however, stood out to me. One was the commitment from everyone from Beatrice Fraenkel and Joe Rafferty, Chair and CEO, through to the front-line leaders, to the staff who all put patients at the heart of what they do. The second was the turning point stories told to me by the service users. One of them was told to me by a lady who had written it out to read to me she felt this was the best way given she felt ill, and that her voices were very active and she thought she would lose her thread if she didn’t. With her permission I attach her story which needs no commentary from me, and particular thanks to the service users at Ashworth, one of whom thought he could do my job better than me #discuss.
I am a service user carer rep for Mersey Care. Thank you for letting us share our stories and journeys with you. My childhood experiences are the major contributory factor to my mental health.
I was physically, psychologically and sexually abused by my mother and her many men friends from the age of 4 years to 18 years. I came into mental health services in my late twenties. A member of staff locked me in a cleaning cupboard and I had my first episode of dissociation, it was the smell of the mop – my mother often shut me in the cupboard under the stairs.
Shortly after this I suffered my first breakdown and ended up in this unit we are in today. I have been in and out of units like this for approximately 18 years. It was a while before I disclosed about the abuse – I was still too scared to tell.
I had been self-harming since I was 6 years old. I hear three voices all the time, day and night. I still self-injure but not as often. I ‘see’ my mother every day. My diagnosis is extremely complex – I have that many labels I could have a different one for every day of the week.
All those years ago the treatment was very much drug focused. I had been drugged up for about 12 years until I became unwell due to the medication interacting. I was taken off the lot.
This is when the lights came back on. It was the start of a new beginning for me. I now have a brilliant team in the community. I still have psychological therapies today. I can still relapse and end up as an inpatient, but not as often.
I came into Mersey Care because my social worker asked if I would like to do some work with them. It took a while but I did the R/S course. I never went to school. I was given enormous support from the HR team and since then have gone from strength to strength. I, like many other service user carers, get involved in things like corporate induction, helping 4th year medics in the Royal Liverpool Hospital, talking to 1-3 year psychology students at Liverpool University and shortlisting Doctorate in Clinical Psychology students for Liverpool University. I am also helping A&E staff by explaining why I self-harm, and we are now trying to put a teaching package together for them.
I believe we should all work together to help people of all walks of life to help change attitudes. I am heavily involved in the No Force First initiative. Through this I work alongside MVA [Management of Violence and Aggression] staff on effective communication training, to reduce control and restraint by talking to people instead.
I am also involved with the safeguarding team. If there had been a team like this when I was little things might have been different.
Above all we need to look after each other – service users and carers and staff. Mersey Care staff do a very difficult job. I have been very difficult to nurse over the years. I believe Mersey Care are doing this already. Change is frightening and Rome wasn’t built in a day, but we are seeing things in a recovery focused way, and Mersey Care are helping, supporting and encouraging service users and carers to look to the future, moving people on at their own pace and giving them help to live a meaningful life, despite our difficulties.
I have come a long way and have experienced both good and bad treatment – thank God more good than bad these days – both in the community and as an inpatient. I hope that things keep changing for the best. I know that service users, carers and staff of all levels are working together to make good care and change possible. I can’t thank Mersey Care staff enough. Without them I wouldn’t be here talking with you today.