Written evidence submitted by Rethink Mental Illness (DEL0194)
Mental Health Services during Covid-19
Mental health services have historically been underfunded and not prioritised within the NHS. That has begun to change in recent years with the advent of the Five Year Forward View for Mental Health, followed by the NHS Long Term Plan with its welcome focus on joined up community services. But it remains the case that the experience of many people who are severely affected by mental illness is of having to struggle to access the help that they need. This is important because the context in mental health services in normal times is one of high demand and limited capacity.
This submission provides new evidence that the pandemic has had a seriously detrimental impact on people severely affected by mental illness and the services they rely on to stay well, despite the heroic effort made by the NHS and others.
Our policy recommendations are not aimed solely at the NHS. We believe that the Voluntary and Community Sector has a significant role to play in supporting recovery from the pandemic, but we critically need a cross Government response aiming to improve mental health across the population, and with a particular emphasis on people severely affected by mental illness.
Note on our research
Rethink Mental Illness is conducting ongoing research into the experiences of people severely affected by mental illness during the pandemic. Our response to this inquiry shares results of our online survey (which remains open for responses) analysed up to April 22nd. Approximately 800 people had responded by that point. This is the same cohort as formed the basis for our earlier submission to this inquiry’s initial call for evidence; this response looks at those data in greater detail.
Where we have broken respondents into separate groups, we have shared the number of respondents in that group, otherwise percentages refer to all respondents who answered a given question.
Meeting the wave of pent-up demand for health and care services that have been delayed or reduced due to the coronavirus outbreak
The pandemic and measures taken to contain it are making symptoms worse for people severely affected by mental illness. 80% of respondents said that their mental health was worse as a result of the pandemic, including 28% stating that it is ‘much worse’.
On health services overall, 54% said they were exercising less than usual, with 52% eating less healthily and 21% drinking more alcohol. These are significant physical health risk factors for people severely affected by mental illness, who have a life expectancy of up to 20 years fewer than the general population. Many respondents identified challenges accessing food delivery slots and medication, which could further affect their physical health. The pandemic may be places our beneficiaries at heightened risk of dire consequences for their physical health.
A number of other themes emerged in our research around building demand for mental health services during the pandemic. These can be grouped into two main areas – first, issues around cancelled or rearranged appointments, leading to feelings of stress and abandonment. Second, issues with replacement remotely-delivered services, for which our respondents understood the need but which many found inadequate or impossible to use.
It is worth noting that people who are digitally excluded and were unable to take our survey are likely to be more at risk.
Cancelled or reduced appointments
35% of respondents said that they hadn’t booked or attended medical appointments—for either physical or mental health—which they should have done because of fears of overburdening the NHS, fears of catching coronavirus or because appointments are unavailable. This points to pent up demand for the physical and mental healthcare needed to stay well.
42% of respondents said that their mental health was worse because they were getting less support from mental health services and of people who've been supported by mental health services in the last 12 months (792), 47% said that getting less support from mental health services during the pandemic had made their mental health worse.
58% said support from mental health services had become worse (35%) or much worse (23%) and 24% said it had been about the same during the pandemic. The qualitative responses illustrate the challenges people are facing, particularly on remote participation in mental health services:
‘It has all stopped. Nobody even responds to an email. CMHT rang week one and said they'd ring once a week. That was a month ago. No call. No response to email. They make me feel even more pointless and worthless and like this is all a sign that I shouldn't exist.’
Remote delivery of mental health services
Of people who said that their mental health was much worse as a result of the pandemic (235), 58% said this was a result of getting less support from mental health services.
When asked about how their mental health support had changed during the pandemic, someone in this category said:
‘All face to face appointments with the community mental health team (including psychotherapy) have been stopped. I was managing to keep myself safe with twice weekly appointments before the lockdown, I have been offered and tried phone support but don't find it helpful and am increasingly unwell. The community mental health team are aware and know there is a high risk of suicide attempt or me being admitted to hospital, yet they are still unable to have any face to face appointments.’
Many reported cancelled appointments, or online or telephone appointments which were unsuitable for them. Often, these included some concern around new technology, being unable to use it or requiring support to do so (which could be challenging to access). Cancelled appointments also cause significant frustration and harm - people reported waiting significant periods for appointments which were then cancelled.
Our respondents understood the reason for remote participation, but many reported that they have found it less helpful or impossible to engage with. Even those reporting partly positive experiences mentioned that it was inferior to face-to-face support, particularly in combination with other factors:
‘Was recently discharged from talking therapies but still have a care co-ordinator who now checks in by telephone. It is easier to avoid these phone calls and not be honest about how I am doing. I feel like others are more deserving of support.’
Many respondents missed the human connection or physical act of taking time out of the day to focus on therapy. For others it was that they felt that their deteriorating condition or missed appointments would attract less notice than face to face.
But we also know that some people with severe mental illness find it difficult ever to use phones and / or computers, for a number of reasons including cost, skills and symptoms such as anxiety or delusional beliefs. It is therefore concerning that among those who are able to participate in an online survey, dissatisfaction with remote support is so commonplace, as this survey will not have reached those who are most excluded by remote support.
Urgent research is needed into the extent of digital exclusion among people severely affected by mental illness and their experiences of remote mental health service delivery and during the current crisis.
Policy solutions for digitally excluded people are urgently required and should be a priority for NHS England and the government.
These should also examine the experiences and needs of current mental health inpatients, who may face unique barriers in accessing technology (and hence interacting with their informal caring and support networks) while they are on mental health wards.
These experiences make a strong argument to triage face-to-face delivery of mental health services in the community as soon as proves possible and the use of digital technology shouldn’t become the ‘new normal’.
We must not lose focus on physical health checks during the pandemic.
People with severe mental illness must be allowed to self-refer to the NHS volunteer scheme to get support in accessing food and medicines.
Meeting extra demand for mental health services as a result of the societal and economic impacts of lockdown
The issues identified in our response to the previous question could indicate that there is a substantial group of people with a pre-existing severe mental illness which may deteriorate as a result of the lockdown measures. Such a deterioration could be caused by inappropriate mental health service provision, inadequate supported housing on discharge from a mental health inpatient unit, or simply by the fact that people cannot access their informal caring networks of support groups, friends, and family.
‘I am no longer able to attend my personality disorder group, which provided skills and insight into managing my illness but also the opportunity to be […] supported and connected - it’s been really hard not having that for the foreseeable future [...] Overall I’m finding the uncertainty of when life will resume really hard because until it does everything feels a bit futile.’
Many of our respondents, who might well be managing their illness well under normal circumstances, shared the fact that their normal routines depended on interactions with friends or family, and are therefore impossible at the moment. ultimately this deterioration could lead to later detention under the Mental Health Act, or to escalating self-harm or suicide attempts. Our services have informed us of detentions of service users who they believe in normal times could have been supported to live in the community by multidisciplinary teams.
It is also possible that the societal and economic impacts of the lockdown could cause the development of mental health problems across the population, and that otherwise common mental illnesses (such as anxiety or depression) could worsen to the point where they become more severe.
Our survey did not ask about changes in mental health over time, but some of the qualitative responses indicated that matters had worsened as the situation developed:
‘At first I found the social distancing calming but now I am full of anxiety about how long it will last. I am desperately missing my family and social contact which is a distraction from thinking about myself.’
People live alone face particular challenges like being unable to access informal caring networks. These people are likely to include those whose mental health is typically good enough for them to live independently but is placed at risk by the inaccessibility of previous support. It’s likely that the loneliness and isolation they identified as worsening their mental health is escalating as the lockdown progresses:
‘Just feel totally alone, no face to face contact with friends or family and zoom or phone isn't the same. I feel like I'm living on a very lonely planet.’
A number of areas that have responded quickly to the coronavirus crisis to support their populations. In Somerset, an alliance of the NHS Trust and local voluntary organisations, including Rethink Mental Illness, has brought forward implementation of a 24/7 phone line for emotional support with transfers to local specialist interventions. This means they are referred to local holistic treatment and support, helping support people during the current crisis and reaching wider groups of people severely affected by mental illness in rural areas.
We recommend that the Government collate and share lessons to ensure best practice is reflected across the country.
These experiences demonstrate a renewed case for additional emergency investment in community mental health support, in order to adequately ensure that people aren’t falling through gaps and that .
If there is a population-level increase in mental ill-health, that GPs, IAPT, and specialist mental health care (including non-clinical from the VCSE sector) are able to support a significantly higher caseload.
Meeting the needs of rapidly discharged hospital patients with a higher level of complexity
People who have been recent inpatients in a mental health hospital
Those people who have recently been inpatients in a mental health hospital are among some of the most vulnerable groups. Discharge is well known to be a time of heightened risk of suicide attempts, and should be carefully managed by a multi-disciplinary team considering all the of the aspects of the person’s life and health.
There are numerous concerns emerging from and our services around the rapid discharge of some inpatients during the pandemic. These have focussed on both those who may have been discharged too early from inpatient units without the provision of appropriate support in the community to keep them well, and on those who have not been discharged and are therefore potentially at risk of contracting Covid-19 in inpatient care.
50 respondents to our survey had been recent inpatients at a mental health hospital. This is not a sufficient sample size to give accurate statistics, though their qualitative evidence is illuminating.
Though we did not survey patients in secure care, we have heard through our services of issues in accessing tests and inpatients being informally ‘quarantined’ on the basis of having suspected Covid-19, alongside confirmed cases. This is deeply worrying and a risk to life; the lack of guidance for clinicians on risk management for patients in inpatient settings urgently needs to be addressed. We also are concerned the service user experience of acute care is being reported only via clinicians.
Mental health symptoms
The illnesses of this group are likely to be more severe than other respondents, and their risk of relapse is higher.
When asked to describe any changes to their mental health symptoms, some described the lack of support they had received since being discharged – which is likely to include insufficient assessments at the point of discharge - as a result of the pandemic and shared examples of the deterioration of their mental health as a result:
‘Discharged from acute hospital three weeks ago [early April 2020]. No community support. Despite 2 Mental Health Act Assessments they won’t put me back in hospital and said that the community should support me. There’s no support apart from the offer of a daily phone call. I’ve continued to overdose and given up telling them as there’s no point.’
Others shared their worsening symptoms with references to the escalating impact on their mental health:
‘It’s become harder to manage my eating disorder. I have had a slight relapse and have incredibly intrusive thoughts around exercise and food, much more so than previously, because I cannot freely leave the house.’
These experiences paint a picture of a group of people who are at heightened risk of worsening symptoms, either because of their specific illness or the fact that they have only recently been discharged and should be provided with additional support.
The insights from this group are shared with other groups of respondents to our survey. Some of these matters could potentially be alleviated through programmes which reduced digital exclusion and other such barriers. But ultimately the only way in which these feelings can be addressed is through the loosening of the lockdown measures.
In common with other groups identified within our survey respondents, people recently discharged from inpatient care are placed at substantial risk by the fact that mental health services have, for the most part, moved towards remote delivery.
There is a strong case for ensuring that Community Mental Health Services are among those services which return to face-to-face delivery as quickly as possible.
This group will not necessarily be well-served by population-level mental health and wellbeing provisions such as improved or increased helplines, online counselling or services, or even remote appointments.
We are calling for a robust consideration of the needs of this specific group, alongside all those severely affected by mental illness, within government policy-making around Covid-19.
This consideration should also evaluate any gaps between community mental health provision and social care provision in the current crisis, particularly in light of the changes made to the Care Act by the emergency legislation, to determine whether people with severe mental illness (and their carers) are falling between the gaps of mental health care and social care, and whether changes could be made.
It is vital that the service user voice is not lost during the pandemic. Urgent engagement with users of mental health services, including inpatients and those in the community, is required both during and as we move out of the pandemic.
Clinicians working with inpatients in mental health services must be given guidance on how to managed Covid-19 risk with people severely affected by mental illness.
1419 people responded to the survey between April 17th and April 22nd, 2020. The majority have been supported by specialist secondary mental health services in the past year and belong to one or more of the categories below.
50% have been supported by Community Mental Health Teams (CMHTs)
8% have been inpatients in the last year
30% claim welfare benefits for a reason related to mental illness
17% care for someone living with a diagnosis of severe mental illness
These figures do not add up to 100% because people can be members of more than one category. The survey remains open until Sunday 10th May.
About Rethink Mental Illness
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.