To date, we’ve done 16 interviews with people using mental health services across the UK. This is the third 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 are being uploaded here, and quotes from some interviews have been included below with the interviewee’s consent. Their names have been changed to protect anonymity.
In previous blogs we highlighted some changes to the delivery of mental health services during COVID19, such as lack of access to a psychiatrist and difficulties accessing crisis intervention services. As well as these significant changes, the people we spoke to reported many other changes in service provision, including Community Mental Health Teams (CMHTs), individual and group therapy services and early intervention programmes. These experiences are outlined below.
Changes to Contact
Many of the people we interviewed told us that contact with their mental health service(s) has changed drastically.
A number of people told us how their contact had been significantly reduced or scaled back. Instead of spending a full ‘therapy hour’ (meaning 50 minutes in most cases) multiple people, including Alex and Dylan, told us that their contact has been reduced to between 1 and 20 minutes:
“My therapist said that she’d be on the ward but then coming back to the community unit on a Thursday and would have home calls with me and others – I said “Yeah, that’s fine”. Then all of a sudden, I then got a phone call from somebody else in the team that said “No no no, that’s not happening, you won’t be getting any phone calls from her. I’ll just give you a call once a week to make sure you’re alive!” “Right, okay”, I said.” – Alex
“Initially all my CMHT appointments were cancelled, I had a 20 minute “how are you?” phone call rather than the hour long appointments I was used to having.” – Dylan
As well as having much shorter ‘check-ins’, Kerry, Jesse and Ali told us that contact is happening on an ad-hoc basis, less frequently than before COVID19:
“My care coordinator’s become even more unreliable than normal. She probably phones every 2-3 weeks for a minute, and that’s about it.” – Kerry
“Normally my care coordinator would come round each week and see me, but at the moment i’m only talking to her on the phone once every two weeks, and it’s kind of just a brief like… making sure i’m still… y’know, fine. Rather than she’d usually come round and stay for like an hour and we’d have quite in-depth chats. So I’m only speaking to her once every two weeks for about 10 minutes.” – Jesse
“When COVID19 began [the] service was quite slow to react, I had to chase them about how my physical health should be monitored and repeatedly request video chat rather than phone. The support I currently receive is: Video chat with dietician every other week (I wish it was every week as it’s what’s keeping me stable and progressing.) Ad-hoc video or phone chat with care coordinator – about every other week.” – Ali
Robyn and Stacey told us that parts of the support they were receiving has stopped entirely:
“No one answers the CMHT phone line and my CPN rarely calls. The psychologist I was working with sent me a letter saying she could no longer work with me because it was obvious the therapy was triggering me, rather than helping.” – Robyn
“The support I was having from the Employment Service within the CMHT has also completely evaporated.” – Stacey
It was more common amongst the people we interviewed for group sessions to be cancelled altogether, rather than to be delivered remotely or be limited, than 1-2-1 sessions.
“Well I used to have therapy twice a week, I’d have an individual session and a group session, and since I’ve went down to basically only having a phone session, that’s every two weeks. The groups haven’t been running at all.” – Ashley
“In January I’d also started attending a Distress Tolerance group, which is as close as you can get to DBT in my area. I’m now just having weekly one-to-one phone calls with one of the facilitators to go over skills.” – Stacey
“I received a letter from secondary MH team to say that all therapy sessions, support groups or face-to-face sessions have stopped.” – Rowan
Routine is an important part of the therapeutic relationship. Service users are penalised and discharged if they are unable to demonstrate enough regularity to attend routine appointments. For some people, particularly those in long-term therapy, contact with a care team may be the only consistent anchor point in the week, something they hold onto and build other routines around. Jesse told us this consistency has been important for helping them to manage their mental health:
“Doing it [appointments with a psychologist] the same length, same time, that kind of thing, keeping that consistency has been really nice – not having to adjust to something new as well.” – Jesse
Unfortunately, unlike Jesse, many of the people we’ve spoken to have had these routines disrupted, and in some cases services are failing to provide any consistent contact at all. Changes to routine such as these can pose particular challenges for people with Autism, and other neurodiverse people.
Access to video appointments
Some services that have cancelled face-to-face appointments have established confidential video calling systems, thereby enabling them to offer remote face-to-face appointments. However, access to video calling has been inconsistent, even between different services within the same NHS trust, as Jesse told us:
“We were supposed to be doing it over Zoom or Skype or something, the service hasn’t rolled out video stuff yet, they haven’t worked out how they’re going to do it, they have concerns about it. Even though I’m also doing stuff with behavioural family therapy and they’ve rolled out their own confidential video calling system, so I don’t really understand why psychology can’t either use their service or get something similar, because it would be quite helpful.” – Jesse
Echoing Jesse’s experience, Dylan says they have also found video calling, where available, helpful for them:
“Recently though my NHS team have started replacing appointments with video call ones, which feel a lot more normal and allow for much more helpful sessions.” – Dylan
Whereas others, like Ali, told us that they do not feel comfortable video calling:
“I’ve been waiting for allocation since Jan. I met the new person by video chat this week, it didn’t go well, it felt very clinical and that they didn’t understand me… They don’t seem to have thought about how support could be adapted via video message, no clear directions of how things will go other than a ‘quick catch up’.” – Ali
It is important the people are given the option of video calling. Some people, including Avery, Robyn and Kerry, told us that all of their appointments (the ones which were not cancelled) were now happening over the phone.
“All of my face-to-face appointments have been cancelled, or moved to telephone appointments, but in the telephone appointments they’re not really been able to make another appointment. It’s just been a one-off “are you currently fine?”.” – Avery
“Before COVID19 and lockdown I had [a] weekly appointment with my CPN and had just started working with a psychologist after an urgent referral because my mental health was deteriorating. Following the lockdown, I received a call saying everything would be moved to telephone appointments.” – Robyn
“About a month and a half ago I had a bit of a relapse with psychosis and I wanted to phone my care coordinator to explain what’s going on, and to explain to her before she was coming to see me that afternoon. Then it turned out actually from that day onwards they weren’t doing face-to-face appointments. That made it very tricky because it was hard to get the treatment I needed.” – Kerry
Alex told us that they find not having the option of a video call, and the obvious inconsistencies to provisions of services across different regions of the UK, frustrating.
“I find it frustrating, I keep seeing on Twitter all these psychologists saying they’ve started doing Zoom and group sessions online, and i’m like… why’s my team not doing this?… They did say in the beginning, it was mentioned that they might sort of be looking at doing that, but they’ve taken everybody out of the community team and put them into acute, so I don’t see that.” – Alex
Already without support
We also spoke to several people who, despite having long-term mental health conditions and actively seeking support, have been without specialist mental health support from the NHS for a significant length of time. In light of COVID19, some people in this situation, like Rowan, now feel it will be even harder for them to access the support they need, and that changes to provisions of services are being used as an excuse to further alienate them:
“Shortly before lockdown, the GP phoned me to make an appointment for a review. I thought it was a bit off as this had never been done before. It turned out that the GP wanted to tell me that as the surgery expected to be very busy in the future, they couldn’t have ‘people like me coming in every week.’ He didn’t explain what people like me meant, nor did he say what to do if I needed a GP. To be honest, I think the surgery has wanted to offload my care for a long time (signposting me to voluntary support clubs, coffee clubs, chair based yoga!) I think they are now using the Covid crisis as an excuse.” – Rowan
Sam told us that they will have to wait at least another year for an assessment, on top of the 18 months they have already waited, because they did not want to do an intensive 90 minute assessment over the phone:
“I’m on a two year waiting list for psychology… they have two waiting lists apparently, one to actually get assessed to see if it’s right for you, at which point then they might take you off anyway, and then another to actually start treatment. I’m now at the top of the waiting list to get assessed for it, but they said it might be an hour and a half assessment and I didn’t really want to do that over the phone, so that’s going to delay it. And yeah like i said, I’ve been waiting a year and a half for that, and they said it’s going to be at least another year.” – Sam
Treatment is less effective and time-limited
The exceptional changes outlined above have had a marked impact on the ability of mental health services to provide effective, quality treatment to the people we spoke to. Simply being consistent and dependable as a provider is crucial for building a productive therapeutic relationship. For some service users, the speed at which these changes have happened has in itself been difficult to adjust to. As Alex said:
“I don’t really deal with change very well, I like to present that I do.” – Alex
Treatment is less effective
A large number of the people we spoke to who are currently under community mental health services, told us that since COVID19 they no longer feel able to benefit in the same way as before.
Stacey told us that, instead of a skills-based group, they feel uncomfortable now being expected to share specific personal details about their life with the facilitator, who they have not built a 1-2-1 relationship with:
“It’s not remotely the same. In the group setting we weren’t meant to talk about personal issues, just the skills, and I hadn’t had the one-to-one time with the facilitator to build up the kind of relationship needed to do that anyway. Now that we’re doing the phone calls I’m supposed to talk in more detail about specific personal issues I’m trying to address, but without that relationship and precedent[sic] I feel quite awkward.” – Stacey
Trust between service users and health care providers is vital. For some people with mental health conditions, particularly those who have been marginalised, discriminated against or abused because of their conditions, trust can be very difficult to build, and even harder to repair once damaged. Lou told us that having their sessions over the phone makes it even harder to trust their provider:
“It’s kind of increased the distrust I have in certain aspects of the service, I suppose because you can’t see that person’s face and can’t see their body language.” – Lou
Ali told us that they find their sessions exhausting and unhelpful:
“My medical appointments exhaust me and I dont have the capacity to do them for other things. I do try to use them once a week as I feel bad for my family if I don’t, but it doesn’t help my mental health.”- Ali
Robyn also received advice they did not find helpful, such as to make a cup of tea and restart medication they had previously been weaned off due to an addiction – potentially exposing T15 to the risks associated with addiction whilst access to a psychiatrist/prescriber is limited:
“The one time I managed to get through to CPN she told me to relax, go make a cup of tea and prescribed antipsychotics and benzos. The benzos which I had previously been weaned off because I had developed an addiction to them. There is no doubt she is aware of my history but that doesn’t seem to count right now.” – Robyn
Dissatisfaction with the provisions of services, and the feeling that mental health services are unhelpful at the moment, also appears to be shared by some staff. Sam, who is both a service user and provider, told us:
“No one really knows what’s going on and that’s my experience of work, obviously i’m not in management or anything so I’m not involved in a lot of decision making, but everything seems to be changing on a weekly, if not daily, basis. No one really seems to know what’s going on, the communication between management and people actually working with patients is even worse than usual, so everyone’s just running around like headless chickens and no one really knows what’s happening… it’s not really very helpful for anyone.” – Sam
Treatment is time-limited
Despite services being unable to provide the same quality treatment, in some cases we’ve been told that the remote support users are still currently receiving is being deducted from funding that was commissioned prior to COVID19:
“I only have a few more sessions to go, and while I feel it has helped somewhat, sadly I don’t think I’ve got the benefit from it that completing the group sessions would have given. I’m worried about having to re-do the treatment in the future and feeling like i’ve failed because ‘one go’ wasn’t enough.” – Stacey
“I worry about support being time limited in a time where support will be less effective. EG 6 sessions for eating disorder support where it’s supposed to tackle behaviours may not be so effective in lockdown – eg someone can’t go out to eat or have support to challenge foods face to face.” – Ali
Funding that was commissioned prior to COVID19 was done so on the acknowledgement that the service user required support with a specific set of difficulties surrounding their mental illness. For many people with pre-existing mental health conditions, those difficulties are being compounded by the unprecedented global emergency surrounding Coronavirus. The expectation that service users should continue addressing the difficulties that they were initially commissioned treatment for within the same timescale and during a pandemic, is unrealistic, unreasonable and unhelpful – not least because the services themselves are unable to provide helpful treatment.
We would not be surprised if the reduction of services due to funding is a long standing feature of the pandemic for many years to come. Mental health services were already on the brink having suffered years of underfunding, and it is extremely troubling to see the current crisis already being exploited to cut services further.
Alex told us that they feel the progress they had been making with their mental wellbeing and their therapy has come to a standstill:
“My biggest concern is that it’s halted my therapy, it’s halted where I am.” – Alex
It is disgraceful and utterly unacceptable, at a time where people with mental health conditions are at an increased risk of relapse or recurrence of symptoms, that additional funding has not been made available to allow mental health services to provide quality support to users throughout COVID19. The Government has abandoned people with long-term mental health conditions in their response to COVID19.
Uncertainty about accessing services after Coronavirus
Some people we spoke to, including Stacey and Alex, expressed concerns that they will not be able to access support even after Coronavirus has passed:
“Before starting my group I’d discussed the possibility of getting further support for issues like binge eating and trauma once it finished, as those things realistically won’t be solved by Distress Tolerance. I now very much doubt this support will ever materialise. I’m also concerned that they’ll decide my mental health “isn’t bad enough” for the CMHT and completely discharge me without asking and before I’m ready.” – Stacey
“I’m hoping that everything starts back up again, I’m only at the beginning of the pathway that they’ve got me on.” – Alex
Echoing their concerns, Avery, who is a service user and researcher in this field, told us they feel the measures which are being taken now will have a long-term impact on the NHS, and that a lot of people will not receive the care that they need:
“It’s just, the way this is going to change the pressure on the health system for such a long time, just feels like it’s going to be this long term stressor where a lot of people are going to be forgotten.” – Avery
Avery went on to say that they believe it is unlikely that some mental health services will return after COVID19, if those services currently still exist at all:
“A lot of services have been suspended indefinitely, and my perspective on that – because I am a researcher in this field – is that I think a lot of services are at risk of not coming back. So although i’m not currently discharged from them, I think that – I don’t know how much my anxiety is feeding in – but i’m not confident that they will be coming back, even if they currently exist.[sic]” – Avery
Later this week we will be publishing part two of this blog, in which we make clear the effect these changes are having on the mental health of those people we spoke to.
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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