Last week we published part 1 of a blog about changes to the delivery of mental health services during COVID19, based on 16 interviews that we’ve done with people using mental health services across the UK. In that blog we highlighted major changes, including significant reductions in contact, inconsistent and ad-hoc check-ins, disparities in the availability of secure video-calling systems, a fall in the quality of treatment for some and uncertainty about the provisions of services after COVID19.
This blog, part 2, will expand further on the lack of alternative support for people living in the community, and the impact that changes to the delivery of mental health services has had on mental health. We’ve used the same 16 interviews as in part 1 to inform this blog. Pseudonym’s are used to protect their anonymity.
Some of the people we interviewed gave consent to publish their interview in full, which are being uploaded to the MadCovid website here, and quotes from some interviews have been included below with the interviewee’s consent.
For the purpose of this blog, we will be using the term ‘neighbourly support’ to refer to informal community support, such as that from a neighbour or citizen who lives locally in the community. Examples of neighbourly support we have seen during the pandemic are picking up prescriptions or shopping, and offering friendly conversations. We’ve chosen to use ‘neighbourly support’ to avoid confusion with the clinical term ‘community support’ in reference to Community Mental Health Services.
LACK OF EQUIVALENT / ALTERNATIVE SUPPORT
Since the Coronavirus outbreak, there have been repeated calls to support one another within our communities:
“There has never been a more important time for London to work together in our local and business communities to support and be kind to each other.”
Reads mental health advice on London.gov.uk.
While peer-support and neighbourly support is a highly important resource for some people with mental health conditions, it is of the utmost importance that a clear distinction continues to be drawn between neighbourly or peer-support and therapeutic support. The need for specialist mental health support – whether that be from a psychologist, community mental health team or psychiatric nurse, etc – cannot be filled elsewhere. Equally, health care providers cannot offer the same kind of support that a peer-supporter can.
Difficulty accessing local support
Mirroring the difficulties people told us about accessing NHS mental health services, highlighted in part 1 of this blog, since lockdown measures were introduced some people have found neighbourly support difficult to access. Ashley told us they live alone in an isolated area, and that they don’t have anyone around to talk to:
“I’m finding it quite difficult because I live alone so there’s not really anyone around to talk to, so i’m feeling quite lonely.” – Ashley
And Stacey said they did not have the robust support network that they would like, and that this causes them anxiety:
“I feel like my support network is much less robust and individualised than it used to be, which is causing me a fair bit of anxiety as I no longer have regular appointments and check-ins to make sure i’m doing okay.” – Stacey
Support groups and schools etc offering holistic support are also closed or cancelled
Other people we spoke who to had been using support groups within their communities before COVID19, such as educational or vocational programmes or groups led by charities and NGOs, told us that these groups have been cancelled – as well as parts of their NHS care. Some people, like Ali, told us that they benefited from irreplaceable holistic support in these spaces, which has now also ceased.
“Before Coronavirus I was doing a college course, my tutor had done more for my confidence and feelings about myself than any other health care professional. Losing the connection of my college group and tutor hit me hard. I also walk with a ‘walk for health’ walking group which I volunteered with. I’d got used to the support of the group and the joy it brought me to teach others about nature. I am really sad not to see the group.” – Ali
“I was attending a personality disorder service at my local MIND once a week which has also been replaced with a quick phone call rather than the therapeutic things we were doing when the group was running.” – Dylan
“I also went to a social group thing that was for people in the EIP [Early Intervention in Psychosis] service, and obviously that’s been cancelled.” – Jesse
Difficulty in lockdown with families
Whilst some people (who would like to do so) are unable to access much substantive neighbourly support, others told us that being in lockdown with people from their support network has also presented difficulties. Some people we spoke to who are locked down with their families, like Eli, told us that this dynamic can be stressful:
“I like being with my family. However I find my mother to be quite difficult and this has been really stressful.” – Eli
Ali and Dylan told us that they struggle to have their telephone appointments with their family in the house because they are unsure if they will get the privacy they need:
“I find medical appointments hard if family are in the house, I feel like I need to be on my own in the house to have privacy, but that’s not always possible, so I end up having to cancel.” – Ali
“I live with my family which has mostly been fine, but I do worry when I’m having a video appointment that they are listening in… We don’t discuss mental health, so it’s draining having to keep up a facade and say I’m okay when I’m struggling.” – Dylan
And Kerry told us that although they had a good relationship with their parents, who offer support, the support they are able to offer isn’t always what Kerry needs:
“Normally I live alone, but when this all kicked off because of the psychosis relapse I moved back in with my parents, so i’m living with them at the minute and that makes it a lot easier. So I’ve got sort of support from them… I mean, well, sort of, y’know, sometimes that’s questionable.” – Kerry
When it comes to accessing mental health support from family, or indeed any neighbourly or clinical support, people in BAME communities overwhelming face higher levels of stigma and discrimination. Research published by Time To Change in 2014 showed that 93% of the people they interviewed from black, asian and ethnic minority backgrounds faced discrimination as a result of their mental ill-health, and 64% reported being treated unfairly by their family.
Activist Asha Iqbal, who focuses on tackling BAME and cultural stigmas in mental health, wrote a blog for BAMEed in which she spoke on the cultural barriers to mental health support she faced growing up:
“I faced cultural barriers when I grew up as the community didn’t talk about mental health they were self diagnosing someone who had severe mental health problems and saying it was a cause from black magic. There were so many stigmas attached to mental health stemmed from decades ago when there was lack of knowledge about the subject and there still is stigmas attached”
The cultural, and structural, stigmas that people from BAME communities face in relation to mental health and seeking support, continues throughout COVID19. Robyn told us that they have no support from their family because mental health is not spoken about within their community:
“I have no support from family because mental health issues are still a taboo topic in the African community, everyone pretends I don’t exist.” – Robyn
People from other marginalised groups, such as LGBTQIA+ folx, working class people, physically disabled people and fat people, are also likely to experience higher rates of stigma, dicrimination and abuse, which can compound their mental health problems and difficulty accessing support.
Not everyone relies on family for support. Some interviewees also told us about anxiety seeking support from friends, peers and housemates – particularly worries about not being a burden or being over reliant on this support.
“I am struggling to reach out to the few friends I have because I am aware everyone is going through a difficult time and I don’t want to be a burden or trigger for someone else.” – Robyn
“My support network is good but they get frustrated with me easily so I don’t let them know half of what goes on in my head. They can’t take it, and I don’t expect them to be able to deal with it. It’s not fair on them and that’s not what I want them for – I want them for friends not health stuff… I know it’s all out of care but, yeah, I tend to keep quiet with them because I don’t want to rock the boat.”- Alex
“Me and my housemate are really supportive of one another, and communicative, so I am really lucky there. But even then I don’t want to put too much pressure on her, because she is just the only person in my life at the moment.” – Avery
Some people who have been able to access increased peer support during lockdown have found this to be an invaluable resource – especially where they were or felt isolated before lockdown. We hope that this support will continue for them once lockdown is lifted and people return to work en masse.
“Bizarrely I think I feel less isolated socially because now that my friends are all at home all the time with very little to do, like I have been for a long time, they suddenly want to talk and arrange video calls in the evenings.” – Dylan
“I think that i’m quite lucky because I have lots of friends around me and we’ve been doing a lot of Zoom calls and online activities.” – Avery
Others, like Ali, don’t enjoy video-calling and haven’t felt able to get the same benefit from their peer-support relationship that they usually would:
“My mum was my main carer when my partner was at work, I’d see her 3 times a week, usually for a hot drink in a cafe. It physically hurts me not seeing her, I don’t like doing video chat at all, so people telling me to connect via Skype/Zoom isn’t helpful.” – Ali
IMPACT ON MENTAL HEALTH
Lack of specialist mental health support
Service users require the specialist mental health support that they usually receive, to manage their conditions and the day-to-day difficulties that arise from them. Changes to the type, regularity and quality of care that they receive, which were outlined in part 1 of this blog, has impacted people’s mental health in a variety of ways. People do not receive care from a mental health service if it isn’t necessary (and unfortunately, sometimes they don’t receive care when it is necessary), as Dylan said:
“Initially I was really negatively impacted by the changes, like the majority of people under services I really rely on contact with them, we wouldn’t be receiving the care if we didn’t need it.” – Dylan
Like Dylan, Robyn and Alex told us that changes to provision of services has led directly to a decline in their mental health:
“I was going through a depressive episode before the changes were made and since then my mental health has declined even further because there is no support.” – Robyn
“I had just started to trust my therapist. Actually, the week before lockdown happened we were on daily contact, when that all went, things went downhill.” – Alex
Lockdown compounds preexisting mental health conditions
For the most part, conversations around mental health during the pandemic have largely centred around those who might find themselves struggling with mental health issues for the first time. Far less space has been given to discuss the psychological implications of lockdown on people with preexisting mental health conditions, as Sam said:
“I think it’s been very strange how there obviously has been more talk around mental health, around how people are coping with isolation and lockdown, but there doesn’t seem to be any much conversation about actually mentally ill people, which, it’s not surprising in a way because it’s always been like that.” – Sam
This is why Mad Covid was established in the first place – to document the experiences of our community in the face of very little else being done.
Since COVID19 began, there has been a pervasive notion that people with preexisting mental health conditions or disabilities, particularly those who have been isolated for long periods of time, may already have the coping mechanisms to manage lockdown, and might even be able to advise others on how to survive.
“There’s so much we can learn from disabled people as our lives become similarly limited during the coronavirus pandemic”
Reads an article in Marie Curie. It goes on to state:
“For those of us entering this new world, there’s great comfort knowing it is already inhabited.”
People living without preexisting mental health conditions or disabilities are not ‘similarly affected’ by COVID19 to those of us who do. For a start, the current limitations are temporary for them, they know there will be an end to it at some point. The expectation that people from the disabled or mental health community should provide guidance or comfort to the anxious public is emotional labour, and deeply inappropriate – particularly in light of the fact that many service users are currently struggling to get their basic healthcare needs met. It is not a given that people with mental health conditions have the tools to manage lockdown, or even to survive it. People are already dying. 19 year old Emily Owen died by suicide on the 23rd March terrified of the impending lockdown.
“Understandably, lockdown has impacted severely on people who were already depressed. Clients coming to us have explained that their depression has deepened, and they feel an even greater loss of hope for the future.”
For some of the people we spoke to, lockdown is exacerbating the difficulties that they already live with. Ali told us since lockdown began their depression and anxiety has resurfaced, and they feel the life they have fought to build since leaving hospital (following a psychiatric stay), has disappeared:
“I am really struggling with depression and anxiety. I get enjoyment from very little. It feels like my life that I’d worked so hard to rebuild over the last 3 months post hospital discharge has fallen away. I am struggling to focus on things. After 9 months of being sober I’ve drunk alcohol again.” – Ali
Lacking a regular routine or pattern to the days can quickly give rise to additional problems, such as lack of sleep, which can compound day-to-day difficulties. Rowan touches on this as they told us about an overall decline in their mental health, with symptoms becoming more intense and unrelenting since COVID19:
“I am struggling to manage my anxiety, cPTSD, OCD and sensory problems, (seeing flashing lights, hearing loud buzzing sounds) but cannot access any support from my GP who is my sole MH support at the moment. I am struggling to eat and my eating disorder symptoms are getting worse. I am having constant intrusive thoughts (around contamination, fear of abuse by NHS staff, fear that my benefit will stop) and increased flashbacks. I am struggling to sleep, I am struggling to keep a regular pattern to my days.” – Rowan
It is clear that some service users are experiencing profound mental suffering and distress as a direct result of mental health services inability to provide adequate, quality support during COVID19. This is unacceptable.
The same blog from Joy Hibbins said that the majority of people accessing Suicide Crisis’s service, were either currently under the care of mental health service, or had been in the past.
“The majority of clients we are seeing are either currently under mental health services, or have been in the past. They are deteriorating and reaching a crisis point because there is a reduction in community mental health services, at a time when there is an increased need for them. Many of our clients who were suffering the most severe post-traumatic responses under lockdown were part way through psychological therapy, but it has been on hold until the current restrictions are eased.”
Understandably, several people we spoke to told us about a recurrence, or generally higher levels, of anxiety since COVID19 began. Kerry told us that they have been experiencing anxiety again for the first time in years:
“Years ago I was a very anxious person, now I wouldn’t consider myself anxious at all. The past 2-3 weeks, I dunno if it’s because I’ve got no support because of what’s going on, the anxiety’s just risen again.” – Kerry
Others, like Sam and Avery, told they have been experiencing anxiety specifically related to COVID19:
“Sometimes I kind of struggle to leave the house, but if I push myself to go out every day or nearly everyday that makes it a lot easier, so I was really worried that actually if I stayed at home for nearly a week I wouldn’t be able to leave the house again after that. I kind of feel like I can have the odd day where I don’t go out but after two or three days seems to be the tipping point, and at that point I just get really anxious about the thought of leaving the house, so it was really difficult to get back out after that. “ – Sam
“I do consider myself sort of recovered from most of my problems, a lot of my worries and anxieties are kind of about how this is impacting on other people. So I might be struggling to focus on my own enjoyable present day life because i’m so worried about the situation.” – Avery
Sam and Avery also told us that, although they generally feel okay in their mental health, under the current situation they do not feel as secure as they have previously and that it is harder to maintain their wellbeing:
“I do feel even less secure than usual, due to negative experiences anyway I don’t feel like mental health services are what they should be.” – Sam
“I had to put a lot more work into staying well recently. So i’m kind of just aware that there’s no-one really to help if things go wrong. There’s kind of a bit more pressure I guess to stay on top of everything” – Avery
Capacity to cope with swift and unexpected changes surrounding support can often depend on how well (or unwell) a person is immediately before those changes occur. Jesse told us they think that if this situation had happened a few months earlier, it would have had a more severe impact on them:
“I feel like if this had happened maybe three months ago, the loss of my care coordinator coming round each week, this definitely would have affected me a lot more.” – Jesse
UNDERFUNDING SERVICES IS A CHOICE
The position that many mental health services users have been left in – unable to access the regular, quality support they require – was not a necessary feature of the pandemic. It is the result of years of underfunding, followed by a choice as to the importance and priority of mental health care during the pandemic. What we’re seeing is COVID19 impacting existing fault-lines. The Government continues making that choice, allowing the fault-lines to grow, each day that they allow the underfunding of services to deepen. Service users, like Ashley, are aware that their Government does not consider their essential healthcare needs a priority – this reality in itself affects their mental health:
“I’m very aware that mental health care isn’t seen as an essential service so that’s why they’re cutting them, and then that’s having an impact on my mental health because I feel sort of guilty… I don’t know if that’s the word, it does make me feel quite bad.” – Ashley
There has been a glaring absence of guidance for people with severe mental illnesses and disabilities from the beginning of COVID19. Government has not shown the capacity or inclination to understand the nature of support that is required, or even yet provide the necessary provisions. Once again, service users, like Dylan, are aware of this reality:
“I think the problem comes from the lack of guidance and consistency; as is so often the case the mentally ill have not been given much thought by the powers that be. Had there been clear guidance for services on how to go about replacing the care they would normally give I think adequate care could have been provided for people more quickly.” – Dylan
Lack of provisions for services and decisions around the allocation of key workers has contributed to the lack of support that some service users are currently experiencing, as Alex said:
“What they have here [in community mental health services] is great, but they’ve sent all the really good people to the hospital.” – Alex
Guidance published by NHS England on the 25th March, at the beginning of lockdown, stated:
“The national measures being announced to delay the spread of the epidemic will inevitably have a significant impact on both demand for and capacity to deliver support for people with mental health needs, a learning disability or autism. The impact on people’s mental health will endure beyond the epidemic.”
Decisions that are taken now will have far-reaching consequences. For some people, any changes to provisions that may happen in the future will already be too late. Sam, who is both a service user and provider, told us that they believe it’s possible that a lot of people in the mental health community will die as a direct result of decisions which have been taken around the provision of services during COVID19:
“I think, even though they kind of count Covid deaths through people who’ve tested positive for Covid, I feel like there’s going to be a lot of deaths that are directly related to Covid that aren’t going to be recorded as such, because they would be due to people in the mental health community.” – Sam
This possibility, and the reality of the level of vulnerability people within the mental health community are currently exposed to, was also reflected in the guidance from NHS England:
“People will be at risk of mortality through suicide, injury through self-harm and of self-neglect”
Government must act to increase provisions of mental health services as a matter of urgency – not as an act of kindness, but one of competence, equality and social justice. Calls and campaigns for kindness, such as those we saw during mental health awareness week, are very unlikely to curtail serious mental distress, or further suicides, in the face of maleficent mental health services. As yet, there are no mental health specialists amongst the Scientific Advisory Group for Emergencies (SAGE), who are advising the Government on their response to COVID19. The essential healthcare needs of people with long-term mental health conditions or disabilities are being ignored, and they are treating us as second class citizens.
If you’ve enjoyed reading this blog, please consider donating to our Hardship Fund for people with a mental health condition who are in financial need during COVID19. Mad Covid is an entirely unfunded group.
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