To date, we’ve done 16 interviews with people using mental health services across the country. This is the second in a series of blogs highlighting key issues that they’re facing as a result of COVID19. Some of the people we interviewed gave consent to publish their interview in full, which will be available to read here, and quotes from some interviews have been included below with the interviewee’s consent.
Community mental health (tertiary and secondary) services should, according to guidelines set by the National Institute for Health and Care Excellence (NICE), provide users with a ‘crisis plan’. Crisis plans contain strategies to recognise the warning signs of a mental health crisis, as well as information on how to access local intervention services. They are a crucial part of safeguarding vulnerable people living in the community. 15 of the people we spoke to were (at the time of their interview) living in their communities, rather than in a psychiatric inpatient unit. We asked them specifically if they had been told how to get help in a mental health crisis since COVID19.
Difficulties accessing crisis services
Our interviews suggest that some mental health crisis services appear to be running a limited or scaled back service. Dylan and Jesse told us that they had attempted to access crisis services, however these services were not open or were unable to provide the support that they needed:
“The already pretty poor crisis care has suffered; I phoned the crisis team (in line with my care plan) and the worker on the other end of the phone told me she thought I needed something more to be put in place but in the end wasn’t able to provide or arrange anything despite us both agreeing it was necessary.” – Dylan
“I think my care coordinator actually sent me an email… it had some resources about managing anxiety or something, but it also had the standard list of numbers. I did actually look through them one night when I was struggling a bit, and some of the services are closed or reduced and are not operating at the same times.” – Jesse
Reflecting Dylan and Jesse’s experiences, Rowan received a letter to tell them that phone access to their crisis team was now limited:
“The letter also said that phone access to the crisis team was now limited (it barely existed anyway!). It did not define what limited meant nor did give any details of any alternative support. The letter did not say when this would be reviewed, [or] when services users may be updated with further information.” – Rowan
A number of other people we spoke to told us that whilst local crisis services were still open (to their knowledge), they were extremely reluctant to use them. People were concerned that mental health crises were not a priority during COVID19 and were reluctant to use scarce resources for non-physical reasons:
“Due to the pandemic I wouldn’t be comfortable going to A&E if I were extremely suicidal. I’d hate to be there alone. If I were forced into being at A&E I know I’d feel that I was wasting medics’ time because of not being there for a physical problem.” – Eli
“I would definitely be less likely to use those resources now, as I would worry about putting pressure on already busy services. I feel like it’d have to be a life or death situation for me to ask for help and get it in good time.” – Stacey
“Obviously… you can still go to A&E, but would you at this time? I don’t think I would do!” – Kerry
Jesse told us that they wouldn’t access crisis services due to prior negative experiences of services:
“Mainly it’s the crisis line they refer you to, but from my experiences with the crisis team, if i was in a crisis I really wouldn’t call them.” – Jesse
People living in the community rely on the support and safety net of a crisis plan during times when they are at their most vulnerable, and often extremely high-risk. The exceptional circumstances surrounding COVID19 that currently make some crisis plans unrealistic, coupled with the unavailability of community mental health services, will cost some people their lives or their loved ones.
“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. The idea that everything I depended on to keep me relatively stable and to help me in a crisis had gone was terrifying” – Dylan
Inappropriate signposting and difficulty accessing coping strategies
Where signposting and coping strategies included in a crisis plan aren’t accurate and appropriate, the effectiveness of that plan – its ability to help someone to successfully manage a mental health crisis – is compromised. Ali and Alex told us that for reasons associated with lockdown, their crisis plans are now redundant:
“Most the coping strategies in the crisis plan are no longer applicable” – Ali
“I’ve got a safety plan but most of the steps aren’t doable at the moment. I don’t have a new safety plan for the pandemic… I have a safety plan for normal times, but it doesn’t really work in this case.” – Alex
Others, like Jesse, Sam and Kerry, told us that the services they have been signposted to since COVID19 are simply inappropriate, or unable to provide the kind of support they would need during mental health crisis:
“The other kind of services that they’ve put down on this [email], a lot of them are just online or text based calling services that are for people with more mild conditions. I looked on some of their websites and it was saying ‘everyone gets sad sometimes’, and I know that they wouldn’t be able to understand my needs in a crisis.” – Jesse
“I got a very generic weird letter that had a space for my name… It said ‘Dear_______’ And then a space for them to write my name, but they didn’t even bother to write my name in. So, yeah I feel really cared for – that was sarcastic! It was very generic type things, I did read it and then threw it in the bin because I was like well that’s not going to be much use for me.” – Sam
“I got a letter from CMHT, just like a generic letter, which had – it didn’t have any advice about going to A&E in a crisis or anything like that, but it did have 3 charity helpline numbers on.” – Kerry
Being signposted to charities and organisations totally disconnected to your care team is not the specialised support that people need during a mental health crisis. With mental health resources being stretched to the limit during the pandemic, and an increased focus on those with milder mental health difficulties, there is an urgent need to ensure that those already under community services have access to appropriate support leading up to, during and after a mental health crisis.
Uncertainty about crisis care
Some people, including Avery and Stacey, told us that they had not received any information or advice about whether crisis provision was changing in their area due to COVID19:
“No, I really haven’t, thinking about it. Yeah… no. I can book another appointment with my counsellor if I want to – within term time. But in terms of everything else I’ve not been given any kind of alternative.” – Avery
“I’ve not been told anything new about what to do in a crisis, so I’m assuming the same generic advice as before (care coordinator/Crisis Team/A&E/Samaritans etc, depending on severity) still applies.” – Stacey
Uncertainty about crisis provision, also appears to be shared by some staff, as Ashley says:
“No, I haven’t [been told how to get help in a crisis]. I asked my therapist about it and even she was like, “Yeah, I’m not sure what’s happening” – Ashley
In light of the anxieties, uncertainties and difficulties people expressed around their ability to access appropriate specialised support in a mental health crisis during COVID19, a number of people, including Stacey, Sam and Alex, told us that they are concerned about the possibility of becoming seriously unwell:
“I worry that I could be seriously going downhill without realising it, and that without actually seeing someone I’ll get to crisis point more quickly.” – Stacey
“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, I don’t feel like they would be there to help in a crisis.” – Sam
“I understand they’re trying to prioritise the acute side, but it’s also frustrating because I don’t want to become acute.” – Alex
If community mental health, and particularly crisis intervention, services aren’t expanded and strengthened to meet the current level of need during COVID19, this in itself is likely to lead to more mental health crises and more serious outcomes. As Avery said:
“There’s no-one really to help if things go wrong.” – Avery
This reality has left some, like Robyn, feeling extremely ill-protected and vulnerable:
“Every day I wake up and realise that I am alone and will most likely be just another statistic before this is over. I acknowledge and appreciate all the work the NHS is doing right now but people like me and other vulnerable people are being neglected and left to slip through the net.” – Robyn
On the 24th April 2020, the #savinglivesblog by Joy Hibbins, founder of the charity Suicide Crisis published a blog reflecting the difficulties in accessing coping strategies which some of the people we spoke to also identified. It said;
“Our clients told us that lockdown also meant that they have not been able to use some of the strategies which made life just about bearable for them.”
“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 crisis point because there is a reduction in community mental health services, at a time when there is an increased need for them.”
The idea that people actively ‘slip through the gap’ rather than being ‘pushed through it’, is one that needs sharp interrogation. The language of active slipping in this context mitigates the responsibility that health and social care systems have to proactively support people with long-term mental health needs.
On 27th April, Health Secretary Matt Hancock gave a briefing during which he stated:
“Starting tomorrow we will begin restoration of other NHS services. Starting with cancer care and mental health support …. according to need and according to the amount of Coronavirus cases that hospital is having to deal with.”
In a letter on the 29th April from the Chief Executive of the NHS to all NHS trusts, said:
“For existing patients known to mental health services, continue to ensure they are contacted proactively and supported. This will continue to be particularly important for those who have been recently discharged from inpatient services and those who are shielding.”
As the government prepares to enter the second phase of its response to COVID19, it is vital that they follow through on this promise to provide proactive contact and support for people with mental health conditions – sadly, thus far, that has not been the experience of most of the people we’ve spoken to. Whilst we welcome recognition that it is “particularly important” to support people with mental health conditions who are shielding, and those have been recently discharged from inpatient services, during COVID19, measures must be taken to ensure that the health needs and safety of people under the care of community mental health services are prioritised equally.
The mental health system in the UK was already under immense strain before COVID-19 broke out: underfunded and understaffed, with many people with chronic mental health conditions not getting the help and support they need. The proof of the Health Secretary’s announcement about strengthening provision for people under secondary and tertiary mental health care in the UK will be in the actions that result. The changes that have been desperately needed for many years cannot come soon enough for people who are already experiencing severe distress.
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.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. We ask that you seek our permission before you use any of our material – this includes researchers who want to harvest our data for analysis!