Over the past 10 days, we’ve been carrying out interviews with people in primary, secondary and inpatient mental health services across the U.K as part of our #MadCovidVoices project. So far, 14 people have given accounts of how the pandemic is affecting their mental health and their treatment. This is the first in a series of blogs highlighting key issues they’re facing as a result of COVID19. Some of the people we interviewed gave consent to share transcripts of their interviews in full, which we’re working hard to upload as soon as possible and will be available to read here when ready. All quotes used in this piece have been included below with the interviewee’s consent and we have changed their names to protect their anonymity.
Across the interviews a lot of people told us about the problems and anxieties they’re experiencing around accessing mental health medication. Whilst the logistics of each situation is different, the similarities which stood out suggest that the lack of appropriate guidance from the government, and poor management from NHS mental health service providers, are contributing to the overall difficulties people in the community are facing. These difficulties include accessing a psychiatrist to change, prescribe and monitor medication, and problems associated with accessing medication from a pharmacy.
Difficulties accessing a Psychiatrist / Doctor
Access to a psychiatrist / prescriber being severely limited came up repeatedly. Four people told us that their psychiatrist appointments have been cancelled altogether. Kerry said:
“My psychiatrist appointment has been cancelled as well. The psychiatrist said they’ve cancelled all routine appointments.” – Kerry
We have already published a blog highlighting that routine mental health appointments are being cancelled, and called for the government to act by increasing service capacity in primary, secondary and inpatient mental health services. Cancelling routine appointments has consequences. Alex told us that they are now having to approach their GP, who is not an expert in psychiatry, for help with their mental health medication:
“I spoke to my GP trying to get help with the medication and he just sent me some Diazepam. I really didn’t want Diazepam. I think the GP was reluctant to do anything because it’s the psychiatrist that normally deals with the meds, he just wouldn’t change anything, but I don’t have access to the psychiatrist, or anyone.” – Alex
Stacey wasn’t sure if their scheduled psychiatry appointments were being cancelled, but expressed anxiety over this possibility. They said that they felt mental health services weren’t a priority anymore and were fearful of contacting their psychiatrist despite wanting to do so:
“As I needed to sort some things out with medication, I arranged an appointment with the consultant psychiatrist at the beginning of March, which was meant to take place in May. I’ve heard nothing about whether that’s still happening and I’m wary about calling the team to check – I don’t want to seem like I’m bothering them or being unreasonable. While these appointments feel essential to me, I’m aware that the NHS in general probably doesn’t see them as such.” – Stacey
Without access to a psychiatrist, Toni and Eli, were concerned about how they’d manage their medication or how they would make changes if needed:
“I am a little bit worried about not seeing my psychiatrist for months on end. What if I need a change in medication?” – Toni
“I’m not happy about going so long without seeing the psychiatrist because I find my meds a bit tricky to manage sometimes.” – Eli
As well as difficulties accessing psychiatry appointments, difficulties accessing GP services over the phone to manage medication and order repeat prescriptions was also mentioned. Rowan has difficulties communicating over the phone and has requested email contact instead, which has not been possible. They are now unable to order their repeat prescription:
“I have emailed the practice manager to ask if I can either email the practice (to get repeat medication) or speak to my regular GP (who has some awareness of my problems) using a phone. My practice manager has said that I cannot do this. She has offered no explanation or alternative arrangement for me. I now have no access to… repeat medication.” – Rowan
Face-to-face appointments with a mental health professional for people using mental health medication, are essential to make ongoing assessments about how best to manage their condition and to monitor their overall wellbeing. Removing face-to-face assessments limits providers’ capacity to properly safe-guard people within the community, who are currently at increased risk of going unnoticed if problems do occur.
The Royal College of Psychiatrists published guidance on prescribing and monitoring commonly used psychotropic drugs (Benzodiazepines, Lithium and Clozapine) during COVID19. It states:
“Anxiety and depressive and psychotic symptoms are all likely to worsen during extreme stress and social disruption. Patients will be at increased risk of relapse or recurrence of affective and psychotic illness.”
Despite this acknowledgement, the same guidance goes on to advise that people prescribed medication should be told to continue on their current dosage until face-to-face monitoring resumes:
“For many patients it is likely that advice will be given to continue on regular medication until this can be reviewed in a face-to-face setting and the patient can be involved in shared decision making with their usual doctor or healthcare provider.”
It goes on to state:
“Advise patients to continue their current dosage until the changes in health care provision necessary during the COVID-19 outbreak have been reversed”
The guidance does very little to protect the people they have identified whose mental health is declining through this pandemic, who do not know when they will be able to talk to their psychiatrist face-to-face. At a time when demand for mental health services is outstripping capacity, prevention of crises is essential. Routine psychiatrist appointments, medication reviews, and accessing prescribed medication are all preventative actions. If people become unwell within the community as a result of these actions not occurring, acute services will be unable to meet demand.
A further piece of guidance published by the Royal College of Psychiatrists on Clozapine, Emergency protocol for patients on monthly monitoring of Clozapine, advises to increase the maximum supply of this medications from 5 weeks to 12 weeks:
“Dispensing of greater than the 42-day maximum supply may be warranted if there is a likelihood of there being difficulty in accessing a regular supply of clozapine. The maximum dispensed should be 12 weeks.”
At a time when patients using this are “at increased risk of relapse or recurrence”, it is potentially extremely risky to more than double the supply of a medication that can be fatal in overdose.
We are disappointed that the guidance produced by RCPSYCH has not addressed the predictable consequences of having limited access to a psychiatrist or doctor within the community. During this crisis, we need professional bodies such as RCPSYCH to show greater leadership by calling on the government to put the safety and welfare of people with mental health conditions at the heart of their response to the pandemic.
Difficulties accessing medication
Difficulties accessing medication was also a prevalent issue for the people we interviewed. Some people told us that they were experiencing difficulties getting to their pharmacy to pick up their medication, and were not eligible for home deliveries as they are not considered ‘vulnerable’ under the government’s COVID19 assessment criteria.
“I’m finding it really difficult because my pharmacy and my GP surgery are ages away, I think they’re like 5 miles away, so I have to depend on other people to pick up my meds and drop them off.” – Ashley
“I had a horrific experience with a GP today. He wouldn’t even entertain offering me any help or advice when I asked for help getting prescriptions delivered. Because he said mental health issues aren’t the highest priority.” – Alex
It is unacceptable that people with long-term mental illnesses are not protected under the government’s ‘shielded patients’ list, and consequently aren’t prioritised for access to medication or home deliveries. People who have significant and long-term mental health conditions, for example: people who have been housebound for long periods, people who have recently been discharged from Psychiatric Intensive Care Units, and people who are living alone in isolated areas, are clearly extremely vulnerable. This should have been acknowledged by the government, and those people prioritised for access to the medication they need – including home deliveries where necessary.
“I have received a general email from my council. It refers to elderly and people identified as vulnerable but as I have no social worker and cannot access my GP I am concerned I have been left behind.” – Rowan
People also told us about the significant anxiety they were experiencing around the prospect of not being able to get their medication if people within their support networks contract COVID19:
“We’re [Stacey and their spouse] still doing ok with getting food/meds at the moment, but I have a lot of anxiety around the possibility of one or both of us getting ill and not being able to do that. I’m on weekly prescriptions, and the near certainty that I’d run out of medication if we were both infected really plays on my mind.” – Stacey
“I kind of got together the courage to ask neighbours to bring me some milk and my medication, and then I managed to just about get by for a week. But I think if it had been two weeks it would have been a lot more difficult.” – Sam
Reliance on support from family, spouses, housemates, and local community initiatives to access medication is understandably very difficult for some people. Particularly where a person requires prompting, encouraging, or supervision to take their medication – as well as help to collect it – they may not feel able to ask the people now in their immediate support network for this help. If they live alone, or if they have to self isolate, this level of support may not be an option for them whatsoever. For people who are completely isolated and have no access to a support network, they are stuck in a terrifying situation. When it comes to getting the medication they need, they are forced to make a decision between facing extremely triggering environments (pharmacies and highstreets), or going without their medication altogether.
As well as difficulties getting their medication from the pharmacy, some people, including Eli, told us that there was a local or national shortage of their medication, which was making matters worse:
“I’ve got enough meds for now but I’m quite worried about the pharmacy not stocking them in the next few weeks (see article in BBC?). Several times (before covid) my usual pharmacy has not had all the quetiapine that I need and I’ve had to wait a few days for it to arrive – now that things are more dicey I worry that they might not have it.” – Eli
Understandably, anxiety about running out of medication was a big concern for the people we interviewed. Because of this new reality, Rowan and Alex have been forced into skipping or ‘splitting’ doses to make prescriptions last longer. Not only is this very dangerous for mental and physical health, it is also something that they would be chastised for under normal circumstances.
“My repeat medication is running out, antidepressants, diazepam and anxiety meds and I have had to start taking them less frequently to make them last.”- Rowan
“I also had problems getting medication, so I haven’t been taking stuff as regularly that I should.” – Alex
Without recognition and support from the Government, it’s possible that others will face similar decisions as the number of confirmed COVID19 cases continues to rise.
Mental and physical health medication plays an important role in preventing crisis situations and inpatient admissions. During the pandemic, it is of utmost importance that service users are able to access their medication, as well as have it regularly reviewed and properly monitored. Government must act now to ensure that the essential healthcare needs (including access to medication and a psychiatrist) of people with a mental health condition are met on an equal basis to those they consider ‘vulnerable’ during COVID19. The protections we once had under the Equalities Act and Human Right Act are eroding before our eyes. As the Equalities and Human Rights Commission states:
“Public authorities should also consider your right to life when making decisions that might put you in danger or that affect your life expectancy.”
Restricting our access to essential medication and psychiatry appointments puts us in danger and tragically, some will pay the ultimate price for the government’s failure to act. As Alex said:
“You [the government] have left those who would normally be able to cope with community support with virtually no support, and the small safety net there is has huge human-sized holes in it. Please help the vulnerable to access support and help to avoid Mental Health crisis.” – Alex
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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