In support of the Health and Social Care Select Committee’s upcoming inquiry, Healthwatch England put out an urgent call for evidence around the impact of the Coronavirus pandemic on mental health, maternity and cancer services.
In total we received responses from local Healthwatch teams in almost 50 different areas, providing insights from a range of urban and rural communities representing almost a third of the country.
We combined this with the evidence we have been gathering throughout the pandemic (covering evidence from 110 local Healthwatch) to produce this summary. We have also identified a number of questions the Committee may wish to explore.
1) Healthwatch evidence shows significant levels of anxiety being reported among cancer patients due to poor communication. Those who were in the early stages of potential diagnosis have been left not knowing where they stand because appointments have been cancelled, and those receiving treatment or in need of further medical support have had it delayed without being involved in this decision. This goes against national guidance that says these sorts of changes should be discussed with patients to help them understand the issue and address people’s concerns. What plans are does the NHS have in place to address any current breakdown in communications?
2) NHS England has launched a new campaign designed to highlight that the NHS is still open for business for non-covid related conditions. This follows concerns that people with serious symptoms of stroke and heart attacks are not attending A&E. Will this campaign also target people with early warning signs of cancer and if so how is this message getting out to people?
3) What plans are in place for the restarting of routine screening programmes post lock-down and how does the NHS intend to make these available to people who may have to shield for longer periods of time?
1) There has been widespread recognition of the impact of the lockdown on people’s mental wellbeing, and there have been lots of tips and advice on how to manage your mental health during this time. But given we now face a ‘new normal’, with long term impacts on society and some groups being forced to shield for prolonged periods of time, what extra capacity and new services will be put in place in mental health and will there be opportunities to design this in partnership with service users?
2) We have heard from patients with all sorts of conditions that routine services like medication reviews have been cancelled. However, for certain groups, like people starting on anti-psychotic medication, may need regular blood tests to ensure dosages are set correctly and are working. How is the NHS ensuring medication reviews for patients with these sorts of needs are continuing?
3) We have picked up concerns from some service users, and local partner organisations, that emphasis on digital services is excluding a number of groups who would usually access face-to-face mental health support. People affected by homelessness and those on low incomes are two groups that may be particularly affected. What interim plans does the NHS have in place to support these individuals, and what long-term assessments are planned of the rapid adoption of digital technology and whether or not it is meeting genuine user needs?
1) Whilst the decisions being taken to cancel home births during the covid response make sense, the inconsistent approach being applied across the country is causing anxiety for expectant parents and confusion in online forums like Facebook. Feedback from patients also shows that the inconsistent approach to partners attending appointments is also a source of worry. Combined with people’s fears of catching the virus in (or on the way to) hospital, this is resulting in some people not attending check-ups or going to hospital for labour. Does the NHS have plans for further guidance on these issues and to step-up communications to make clear the arrangements in place at hospitals to keep maternity services clear of Covid-19.
2) Concerns among first time parents are particularly high with patients and partners both reporting particular concerns about post-birth check-ups. What impact has the Coronovirus outbreak had on the health visitor programme and is the NHS prioritising first time parents?
3) The lack of information in being made available in accessible formats for people with learning disabilities or BSL, or in foreign languages, about the virus is causing anxiety or confusion in number of areas but is proving to be a particular concern in relation to maternity services. This is a double concern for pregnant women who may have complex medical conditions and may be shielding. What additional steps is the NHS putting in place to ensure these groups are supported?
We have heard that people are broadly understanding and sympathetic to the situation we all find ourselves in as a result of the pandemic.
However, people have also expressed great concern and anxiety about their cancer treatments being cancelled/delayed.
Healthwatch England’s ‘What people want from the next ten years of the NHS’ report (published in January 2020) found that people affected by cancer (and heart and lung conditions) had a much better experience of care services than people with other issues (inc. dementia). The experiences shared during the covid period are therefore in sharp contrast to what we usually hear from people about their cancer care.
General feedback has highlighted that many people are concerned about the broader impact of social distancing/isolation on people’s mental health and wellbeing. This may likely be compounded by bereavement for some.
Key themes from the feedback provided by local Healthwatch:
Example feedback from a relative of a care home resident with dementia:
“I’m sure she is still scared as she was in hospital, I haven’t been there for her so I expect she feels let down. Her mental health in my opinion has deteriorated I don’t think she understands why staff are gowned masks and face shielded. Although she has gone back to the Care Home, it’s not her home. Because she has had COVID19 she’s in isolation so she’s on her own, it’s not helping her dementia. She still hasn’t got her new hearing aids still no glasses.”
“I gave birth to my first child on the 16th March. We were kept in Hillingdon Hospital for five days.
“On our first day at home a wonderful midwife visited us and did the checks on me and my son, a few days later we had a call to say our next visit wouldn’t happen and we should go to them at the health centre. We did that and were signed off by the midwives.
“I then received a phone call from the health visitor, she said it was instead of a visit. We talked about my son a little and she gave me some phone numbers in case we had any issues. But other than that said there would be no visits and no clinics.
“This has left us very alone while going through this first period with our first child. It’s worrying that no one is going to be keeping an eye on the development of our son. We obviously are doing everything we think is right, but as it’s our first child this is all very new to us and we feel very unsupported.
“This is also because our GPs office is not allowing any appointments and the phone is incredibly difficult to get through on and you only get to speak to the receptionist.
“I underwent a Caesarean section and needed painkillers after my release from hospital. It was very difficult to get hold of the surgery and when I did, I did manage to get a prescription from them, only having dealt with the receptionist, and it took five phone calls over the course of the day as it was sent to a pharmacy. Two days later I needed a couple more days and they said they’d sort a prescription for later that day. They didn’t and then shut, as it was the weekend I couldn’t contact them as they were shut and so I spent over the course of the day over three hours trying to get NHS 111 to help me. They did eventually help me and the pharmacy were incredibly helpful across both days of problems and difficulties by my GP surgery.
“During my time in Hillingdon Hospital, I was kept on a ward, my son in Neonatal, the staff were incredibly supportive. My partner was able to stay with me on the ward, which was incredibly important for his support both mentally and physically. Dealing with the separation from our baby at first and then when we did have the baby on the ward with us physically looking after the baby as after my C Section I was physically limited. I think as we were discharged they were banning partners/husbands from the wards, I honestly don’t think I could have coped very well, and would have needed a huge amount more of the midwives and nurses time if I didn’t have my partner with me. I couldn’t even pick my baby up out of the cot without his assistance. The banning of partners will have a huge impact on the experience and needs of the women on the maternity wards.”