"Who will support my son when I am gone?" What needs to change for carers

Vanessa Pinfold

Yesterday I was in Manchester for a mental health carer conference. I was invited because I’ve been part of a research team developing and delivering a self-management programme for relatives of people experiencing first episode psychosis.

The programme is called REACT and it is funded by the UK National Institute of Health Research (NIHR). The project has been led by Professor Fiona Lobban from Lancaster University and the event was part of a conversation asking: “where do we take our work next?”. A pretty important question if research is going to affect change.

My involvement spans 10 years, from my Rethink Mental Illness days, and it was good to see the chair of Rethink – Phillipa Lowe – at the event. I have ensured the carer voice is part of the REACT research programme, bringing vital expertise from experience into the team, including two peer researchers who helped plan the research and spoke at the conference yesterday.

I always find carer conferences impactful and emotional. I sat down at a table with several people not knowing what conversations would occur but ready to hear some difficult things.

Mental health carers come to events to meet other people and learn from each other. To share their struggles and concerns. We didn’t know each other but within minutes conversations were flowing and solutions to problems were being offered.

One women whose son lives at home and has been unwell for many years said: “I don’t know if I should say this, my main fear and that of many carers I know is what happens when I am gone. Where will my son live? Who will help him?”

No one has any confidence the state will step up and deliver anything like the support they do, let alone the love. To this the table nodded, leaving the question heavy in the air. This point was brought up again from a conference speaker, another mother who had been caring for her son for over 30 years, acknowledging she hasn’t found a solution to help her mange this entrenched fear.

Frustration around barriers to support

I think it’s important to acknowledge that there was a fair amount of frustration in the room yesterday. Carers who were part of setting up Triangle of Care asking why only 16 trusts in England have achieved stage 2 of the process (data as of March 2018).

Started by carers in 2010, the Triangle of Care has been changing cultures in Trusts where implemented well. Our research looking at implementing REACT also uncovered many barriers.

Carers, whose relatives are chronically unwell and have been for years, with their medication having little impact and no other treatments offered, did not find reassurance in what they heard about current mental health policy plans.

The prevention agenda is a positive step forward, but what about their children chronically disabled by years of cognitive decline, poor physical health, low self esteem and stigma?

At the end of the day we sat around tables for discussions – I was part of one on research. Our table discussed ‘what can research do to affect real change for mental heath carers?’.

There was a wide-ranging discussion. Some issues raised do not need more research. They need money, common sense and clear leadership to implement the changes we all know are needed, with the evidence we do have from previous academic research or evaluations of local service developments.

But other research ideas linked firmly to peoples’ own experience. Carers around the table wanted:

• To enrol their son in a study about virtual reality and psychosis – providing skills to deal with difficult social situations and helping others by taking part in research too if they get randomised to the control condition
• Research exploring the links between autism and psychosis, Multiple Sclerosis (MS) and schizophrenia, More work on genes generally and hereditary links to provide further understanding of why people may have developed their mental health problem
• To use their own experience of mental health problems in research with one person looking to do a PhD building on her carer and personal journey in mental health
• New intervention research – carers said “we can’t cure mental health problems so we need better support to manage them”. Research may provide hope that things can change.

For research to affect change it needs the implementation pathway to be sorted out. One point raised was a feeling among carers that mental health staff including psychiatrists are not really interested in new research findings.

We are in conversation with the Royal College of Psychiatrists about this very point; we completely agree – we need to improve practitioner research literacy and interest in research.

The conference was about what needs to change. A lot. A lot needs to happen and the carers in the room will be part of the process however hard it has been for them to date.

They are not giving up and will continue to challenge the systems all around them. Including us.