‘Mental health crises affect carers too’
My son first displayed symptoms of a mental health problem around 2000, in his late teens. He came home just before we were due to leave for a holiday, but he was in such a stressed state, we were worried about leaving him home alone with his sister. Shortly after that, he went into hospital as a voluntary patient. He was eventually diagnosed with schizophrenia. His care was not handled properly, and it led him at various times to threaten to hurt myself, damage our family home and walk out of a supervised halfway house, unchallenged by any of the staff whilst they were discussing putting him on Section 3.
We made a complaint, but this wasn’t managed well either. Then we complained about the complaint process, but the outcome was just as frustrating. This was over 10 years ago.
My son was eventually put on a support regime that worked for him. Today, he has a very normal life – a family, a mortgage, a good job. The care he requires is very light compared to those first few years. But the experience meant that I got involved as a carer representative in the local implementation of the National Service Framework for Mental Health – a 10-year programme looking to improve the broader mental health care system. My role for our county, Northamptonshire, was to advise from a carer/patient perspective. I think in some places it all ended up being a bit of a box-ticking exercise, but I didn’t allow that in my area.
By 2007, I became a carer representative on a national advisory panel that fed into a review of the Mental Health Act. I had the opportunity to highlight the role of the carer, as opposed to the nearest relative. Both carers and patients needed to be listened to, their needs factored into care provision, and patients should be actively involved in shaping their care. The revised Act was implemented in 2008 and the need to consider the views of carers is strongly made in the Guide to the Act. In the last 3 years I have sat on the board of the National Involvement Partnership which includes organisations such as Mind, NSUN (National Survivor User Network) and others. Together we created 4PI, a national standard for involving patients and carers in service design and performance management. It is this standard that I strive towards in my local community, and that I want to see implemented across the country.
When the national Concordat was signed, I began enquiring about what was happening locally. I saw an early draft of our local action plan to discover carers and patients had not been involved in its development. In fact, neither the national agreement nor the East Midlands Ambulance Service regional action plan mention us either.
The Concordat represents a great opportunity to make lasting change, but so far my worry is that at the local level it is primarily lead by professionals, with little or no input from those directly affected by mental health crises, be they patients or carers.
For me, the crucial thing to ask is: what exactly is a crisis? Whose is it? There isn’t a clear answer to these questions in many local plans, I fear. The focus seems to be on when something unpleasant happens in a public place, causing a disturbance. But in my experience the great majority of mental health crises happen within the home, where it is down to a carer to take initial action and where earlier action could have avoided the crisis developing.
Carers have a lot to contribute to the care provision for mental health problems, as they are uniquely placed to know individuals’ circumstances to the greatest degree. Excluding them from conversations on the grounds of confidentiality is, in my opinion, a mistake because the professional is not properly considering the limitations of the Data Protection Act, nor the implications of the Mental Capacity Act. The consequences of that mistake can lead to missing crucial opportunities to intervene, both in a crisis and before a crisis takes place. For this reason I feel that adhering to 4PI standards in local Concordat action plans would help to bring about real, not just theoretical, change.
I will conclude by saying this: the carer matters. It is not just my problem if my son smashes up my house as a result of a mental health crisis or members of my family are put at risk. This cannot be defined as a family problem. There needs to be external support. This crisis is my family’s as well as my son’s, and our views have to matter. If we say ‘we have a crisis’, we have to be acknowledged. At present, it is still very hard for carers’ concerns to be listened to and to get support in their home. This needs to change. Include carers and patients’ perspectives and experiences, and this imbalance will be rectified.