Stroke survivors in Wales struggling with their mental health due to Covid-19

The Stroke Association’s new ‘Stroke Recoveries at Risk’ report has revealed that the reduction of some vital stroke aftercare is causing unnecessary and avoidable problems for stroke survivors in Wales.

The report, which includes the views of more than 2,000 stroke survivors and their carers, including around 130 from Wales, shows that the pandemic has had a clear negative impact on the mental health of those affected by stroke.

In Wales, over two thirds (68%) of stroke survivors said that they’ve felt more anxious or depressed during the pandemic. A staggering 72% have worried more about their health, and 72% have also worried more about what the future holds. Almost half of respondents (49%) have felt less able to cope with the impacts of stroke, higher than the figure for the whole of the UK (where 45% felt less able to cope). 37% of stroke survivors felt abandoned during lockdown.

Prior to the pandemic, stroke survivors were already struggling to have specialist psychological support in Wales. The recommended six-month reviews are not always routinely undertaken by health boards. Our report shows further evidence of the need to improve access to support for stroke survivors.

60 year-old Peter Kemp, from Risca, had a stroke in 2017 and received six weeks of mental health therapy, but says he was then “dropped” by the system and has been in a deep depression ever since.

“I was struggling because I didn’t even recognise myself, I was angry all the time. All that I was, was gone. I felt so alone and eventually, I was going to commit suicide. It was only by chance I didn’t do it. All my life seemed to have been destroyed by the stroke and I felt completely isolated and like nobody understood.”

“In a way I was disappointed that the stroke didn’t leave me with a physical disability instead, because everyone who saw me thought, ‘You look well’. You just end up lying and saying ‘yeah I am fine’.”

Like many others, Peter has struggled with his mental health during the Covid-19 pandemic.

“Thankfully I have not had the virus but the pandemic has still affected me massively. My business was affected. I lost staff which has meant I’ve had to work more hours myself leading to extreme fatigue. This makes everything worse.

“Even though I have been busy with work I feel very isolated. I have had no contact with my stroke group at the hospital until very recently and even now only by video call or over the phone. The Stroke Association Community Steps golf sessions have also stopped so I have not seen anyone there either.

“My mental health has suffered immensely and the stress related to Covid-19 has made it worse. Any progression I had made has been halted. I think another lockdown is inevitable and regardless of whether there is, I think it will be a long time until things are normal. The thought of that makes me even more depressed as I miss the contact with stroke survivors.”

The ‘Stroke Recoveries at Risk’ report paints a picture of Welsh stroke patients not only struggling with their mental health, but also finding it difficult to recover and suffering more severe complex disability, as a direct result of the lockdown.

Key findings from the report in Wales are:

• 64% of Welsh stroke survivors agreed that they had received less care and support to help their stroke recovery
• 40% of stroke survivors have had appointments related to their stroke cancelled or postponed, but only 23% received therapies online or over the phone. This suggests a ‘forgotten’ cohort who were not offered or did not take up virtual therapy and have gone without the necessary rehabilitation and support needed to help their recovery.
• 64% of Welsh stroke survivors surveyed, did not feel safe to go to appointments.
• Carers of stroke survivors in Wales have felt the impact of additional pressures during lockdown, with over half (57%) saying they feel overwhelmed and unable to cope
• However, 55% of carers in Wales did feel that they had received enough information, guidance and support. This was the highest figure of the four countries of the UK.

Juliet Bouverie, Chief Executive of the Stroke Association says: “Strokes didn’t stop happening because of the pandemic, but some treatments became unavailable and most stroke aftercare grounded to a halt or was delivered virtually rather than face-to-face. This means more stroke survivors are living with avoidable, unnecessary disability. Stroke is a brain attack, recovery is tough, but with the right specialist support and a ton of courage and determination, the brain can adapt after stroke.

“In Wales we were already concerned about stroke services in Wales, which are in need of rapid improvements. We’ve been calling on the Welsh Government to introduce a new dedicated plan for improving stroke services in Wales and the effects of the Covid-19 pandemic on stroke survivors has shown that these changes can’t wait any longer.”

Although NHS stroke services remained open throughout, the charity’s new ‘Stroke recoveries at risk’ report shows that the pandemic risks stroke survivors’ hard earned recoveries slipping backwards. As outlined in the Cross Party Group on Stroke’s Report of the Inquiry into the Implementation of the Stroke Delivery Plan (March 2020), the level of care, rehabilitation and mental health support available was already letting down thousands of stroke survivors in Wales.

When health and care systems begin returning services to normal, the charity is concerned that therapy waiting lists will be swamped with a backlog of stroke survivors. The charity’s report shows that there is unmet need and calls on stroke teams to follow up with stroke survivors who had a stroke this year, in order to avoid people being lost or abandoned by the system.

In Wales, the ‘Stroke Recoveries at Risk’ report recommends:

• The Welsh Government should replace the Stroke Delivery Plan when it expires with a new national plan for stroke, with hyperacute stroke units as its priority, in order to drive improvement across the stroke pathway.
• As part of developing a new plan for stroke, the Welsh Government should develop national standards for stroke rehabilitation, as well as prioritising increasing the provision of, and access to, mental health services for stroke survivors. Local health boards should also ensure they have short- and medium-term plans for improving rehabilitation services in their local area while reconfiguration is ongoing.
• Health and care systems to prioritise increasing the provision of and access to mental health services to stem the significant emotional and psychological effects of experiencing a stroke, which have only been made worse during the pandemic period with thousands of people left extremely anxious and isolated.
• Stroke teams to follow up withallstroke survivors who had a stroke this year to make sure they have not been abandoned and are in line to receive the support they need to help them recover and cope with the effects of their stroke.
• Governments and local authorities should provide adequate support to carers to cope with the additional pressures of Covid-19 to ease the burden of constant, round-the-clock caring for loved ones with even less support than normal.

Juliet continues: “We need a big push to get mental health services, rehabilitation and carer support back on their feet. The right treatment and the right care makes the difference between days in hospital and months; the right rehabilitation makes the difference between walking again and needing care for the rest of your life. One stroke with no support risks an array of future problems. This generation of stroke survivors can rebuild their lives, but only if governments and health services act quickly and with genuine commitment. “

“We are at a pivotal time for stroke care in Wales. It is vital that a new plan for stroke is created that prioritises strengthening stroke services, to help ensure they are better able to cope with future challenges faced by the health service in Wales. Our report offers clear, achievable recommendations for policy makers across Wales and we need your help by signing our open letter.”

Prof. Rustam Al-Shahi Salman, President of the British Association of Stroke Physicians (BASP) and professor of clinical neurology at the University of Edinburgh says: “During the pandemic there were significant changes to the way stroke services ran, as we’d all expect. We were worried about the reduction in the number of people presenting to hospital with mini-stroke and stroke. Covid-19 also affected the treatment and rehabilitation available and the speed with which they could be delivered. People who survived strokes that occurred during Covid-19 could benefit if the recommendations of the ‘Stroke recoveries at risk’ report are implemented. The lessons that we have learned must inform how stroke services respond if a second surge of Covid-19 occurs.”

The Stroke Association is calling on the governments and health and care leaders to implement the recommendations laid out in the report in the best way for stroke survivors. The open letter is available to sign here: www.stroke.org.uk/covid-letter

The full UK-wide ‘Stroke Recoveries at Risk’ report can be found here which includes a Welsh specific section: www.stroke.org.uk/covid-report

ENDS

For more information on the research or to arrange a broadcast interview in English or Welsh, please contact: Laura Thomas at Laura.Thomas@stroke.org.uk or on 07776508594.