Written evidence submitted by Rethink Mental Illness (DEL0077)
No matter how bad things are, we can help people severely affected by mental illness to improve their lives.
We’re Rethink Mental Illness, a leading charity provider of mental health services in England. We support tens of thousands of people through our groups, services and advice and information. We train employees, employers and members of the public on how best to support someone affected by mental illness. All of this work guides our campaigning for the rights of people with mental illness and their carers.
Working alongside the people we support, we are saving lives.
Our approach to this call for evidence
This is an initial response to the call for evidence, to help support the evidence session that is planned for 1 May. We intend to respond more fully to the wider call for evidence that closes on 8 May.
The Campaigns and Policy team launched an online survey aimed at people with lived experience of mental illness. The carers of people with mental illness were also invited to take part, answering questions in relation to those they care for.
The survey was launched on 17 April 2020. While the survey is still open, the results presented here are a snapshot of the data taken at the end of 22 April of around 800 people living with mental illness.
Of these people around 8% had been in inpatient care and 50% under the care of Community Mental Health Teams in the last 12 months. Most had been supported through prescription psychiatric medication (80%) or by their GP (65%).
Key questions for the committee to consider
It will be no surprise to most of us that the pandemic is having an effect on mental health. But we were still shocked that 80% said that coronavirus and the measures to contain it have made their mental health worse, including 28% stating that it is “much worse”.
Those who responded to the survey are a group of people with existing, often severe, mental health problems as opposed to people who have developed symptoms of mild to moderate mental illness since the pandemic started. They have also been chronically under served by the system, suffering from decades of stigma and underfunding of services. The NHS Long Term plan, with its focus on improving core community services for most severely affected by mental illness, had at last begun to change this but this pandemic threatens to set the clock back.
Impact on normal activities
The most common reasons that people gave for their mental health getting worse included not being able to do normal activities, not being able to see family or friends and worrying that their loved ones would catch the virus.
These will be difficulties we can all relate to, yet the impact will be very different for those who are already experiencing severe mental illness. For some, regular visits from friends or family, the ability to exercise or access to outdoor space can be the difference between staying well and becoming seriously ill.
The way that people are affected by the changes to daily life depends a lot on their condition and their circumstances. Some people with eating disorders, for example, struggle to find the “safe” foods they need – sadly people told us that they had been in recovery from anorexia but have now relapsed. Those with compulsive behaviours told us that they find the constant public health messaging – and genuine existential threat it represents- is making their symptoms worse.
One person who had been well for years told us that their PTSD has returned, saying “I am experiencing flashing terror and I haven't any tools to talk to a terror that is not, in fact, in any way irrational or disproportionate.” Similarly, it can be terrifying for someone who has paranoid delusions to be visited by healthcare professionals in full PPE.
Impact of changes to mental health services
One strong theme to emerge from the survey is the extent to which changes to mental health services are affecting those who are normally supported by them.
58% say that that support has become “worse” or “much worse” since the UK was affected by coronavirus and 47% said that their mental health had become worse because they are now receiving less support than they used to. The context for this is that even before this crisis hit, many people with severe mental illness were not getting the support they needed. A common theme in the survey was that services had been completely withdrawn in the wake of coronavirus:
“I feel on my own with no support when I had just managed to access support after 2 years of fighting for it”
The survey found that while people understand why services have had to move online, for example, it doesn’t change the fact that many people find online appointments less helpful, and some find them impossible to engage with. This leaves many feeling abandoned. And it is not just clinical appointments that are affected. Community services—gardening groups, peer support groups, crisis cafes—have stopped meeting. Many of those who are entitled to social care because of their mental illness are also finding that visits are being replaced by phone calls, or not at all. We hear from our own services that many Care Act assessments simply aren’t happening.
We have also already heard from our services of instances of people being detained under the Mental Health Act as a result of their mental health problems escalating due to a lack of preventative support.
You don’t need to be a specialist to understand how important face to face contact can be in mental healthcare. And we have real concerns that those patients who really do still need to be seeing their psychiatrist or nurse face to face might be missed.
No face to face contact despite having been intubated and ventilated for 5 days in March before being able to breathe again due to an overdose. I live alone and have no support network and just phone contact has not been enough
We have seen people with cancer and those who have experienced heart attacks and strokes prioritised for face to face care. What about those at high risk of suicide?
Our survey also highlights worrying trends that suggest that the physical health of people living with mental illness is being negatively affected. People with severe mental illnesses typically die 15 to 20 years earlier than the general population. So it is particularly concerning that more than half of our respondents said that they are exercising less than usual and around half told us that they are eating less healthily. A fifth are drinking more and one in 6 are smoking more as a result of the crisis.
And there are specific concerns around how some psychiatric medications, with physical health side effects, are now being managed. One carer told us how her son’s blood test related to the fact he takes the anti-psychotic clozapine was cancelled without notice because staff were self isolating, despite the fact that it was crucial for his health. A test was booked thanks to her pushing, but (for the first time in 12 years) the lab then lost the sample – presumably because of the pressure they are under.
In line with wider healthcare trends, 36% of those who responded to the survey said they had not booked or attended medical appointments, due to worries about catching the virus, burdening the NHS or because appointments were unavailable. And 16% said that they had found it difficult or impossible to get prescription medication that they rely on.
For questions about this submission please contact:
Alex Kennedy, Head of Public Affairs and Campaigns | email@example.com / 07976 367 266