Embargo: European Stroke Awareness Day, Tuesday 9 May 2023
Failure to meet the needs of living with stroke leaves many stroke survivors feeling suicidal
[Trigger alert: if you or any of your family members are struggling with your mental health – please contact a health care professional as soon as you can]
A life saved is a life worth living report, the unmet needs of stroke survivors in Europe, reveals that one in eight stroke survivors has suicidal ideation, a dangerous pattern of thoughts in which people desire or contemplate suicide. Around a third of stroke survivors will become clinically depressed in the years following their stroke and up to a quarter suffer ongoing problems with anxiety.
The report brings together for the first time, research in to over 80 unmet needs of stroke survivors in Europe. It concludes that more should be done to address the needs of the growing number of people surviving stroke.
The report also finds:
- A severe lack of consistent information, preparation and training for stroke survivors and their carers to help them best tackle their long-term needs over time
- The provision of community-based rehabilitation therapies and support is falling far short of people’s needs
- Secondary prevention advice and support is failing to help people reduce their risk of having another stroke
- Many chronic symptoms such memory and concentration problems or fatigue are not well understood, poorly researched and lacking in interventions that work
- Carers’ needs are under-researched and often ignored in service provision
- There is a bias towards physical needs and not societal and long terms/for as long as the person needs
We know that emergency and acute stroke care saves lives. However, stroke is the biggest cause of serious disability and results in every day, long-term physical and emotional needs, that mostly go unmet and unaddressed. Meeting survivor’s needs is key to their recovery. A life saved should be a life worth living.
From ongoing physiotherapy to being able to get on the bus – too often the needs of stroke survivors are not being met. Also, the urgent and ongoing needs of people who are carers for stroke survivors are too often forgotten or ignored. Long-term needs must be met for as long as the individual needs them.
Report author, Professor Charles Wolfe, King’s College London:
Many stroke survivors report that their need for support to regain mobility and speech is unmet in the long term and there is a lack of support to cope with impact of having a stroke such as sight loss, incontinence and fatigue.
However, the report also shows that research into the long-term needs of stroke survivors is thin on the ground and is predominantly orientated towards people’s medical rather than social or societal needs.
Stroke survivor, Jürg, Switzerland:
Awareness and knowledge must improve……on strokes, their causes, effects, remedies and how to help overcome long-term consequences, particularly the non-visible handicaps such as aphasia. Critical are also the availability of financial and human resources of course.
In my long-term, still ongoing, recovery I have a strong need for continued physiotherapy and occupational therapy. It goes without saying, that for this to happen there is a need for financial resources.
In my profession as a university professor, I have been lucky. However, the vast majority of stroke survivors has to live on a much smaller budget and has fewer opportunities for reintegration into the work force. I wish for every stroke survivor to have a personalised long-term, multi-year therapy and, above all, a rehabilitation plan.
And Grethe from Norway, who had a stroke almost 29 years ago, says “We need more rehabilitation, both at home and as intensive 3-week sessions to keep as fit as possible to tackle our lives as stroke survivors. We need access to more therapy overall. Especially, we need to attend to long-term side effects from using our body incorrectly. We need ongoing care and treatment if our quality of life is going to keep steady and not decline.”
Carer, Dorina, Bulgaria,
I care for my mother and I find that I get tired, drained and burnout and feeling lonely warrior sometimes. I tend to neglect my own personal life and needs. There must be funds to provide special therapies for the stroke survivor and the caregiver as well as access to information how to get training, help and relevant advices how to be a successful and healthy caregiver.
Professor Hanne Karup Christensen, Stroke Action Plan for Europe implementation committee chair:
The Stroke Action Plan for Europe highlights important contributing factors to gaps in care including a lack of robust data on longer term stroke management/care, and the associated problem of a lack of reference to life after stroke in national guidelines. The evidence presented in this report underscores the need to implement existing evidence-based guidelines and identify models of best practice which can be applied in (other) European countries.
SAFE is calling for:
- Governments to provide funding to investigate the medium and long term needs of stroke survivors and the improvements in service provision to meet those needs
- Health and social care systems should be designed to high quality information and training for stroke survivors and their carers that is easily accessible over the long term
- All stroke survivors should be followed up at least annually, to have their needs assessed and to be referred to services
- National and local health and social care systems must improve access to rehabilitation therapies for stroke survivors for as long as they continue to show benefit
- National and local health and social care systems must improve the provision of and access to secondary prevention services and support
- More specialist support is needed post stroke to help stroke survivors cope with ongoing issues such as chronic fatigue and concentration problems. Much better access to mental health support is vital
- People supporting and caring for stroke survivors should have timely access to information and support, including meeting their needs to ‘self-care’.
Notes to editors
The Stroke Alliance for Europe (SAFE) is the leading European-wide network of over 30 stroke support organisations.
SAFE was set up as a European Patient Group in 2004 as a result of a European Parliament initiative calling on EU member states to tackle stroke as a preventable disease and is the voice of all those affected by stroke in Europe.
It is a non-profit membership organisation, working to reduce the incidence and impact of stroke in Europe through advocacy, campaigning, education, research and awareness raising.
SAFE’s vision is a better future – a Europe where preventable stroke is eliminated, death and disability minimised, and every person affected by stroke lives their best life possible. i