Home Local News Postcode lottery leaves North West stroke survivors deserted after leaving hospital

Postcode lottery leaves North West stroke survivors deserted after leaving hospital

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Shocking new figures reveal huge differences in the support available for stroke survivors across the UK when they leave hospital. Northern Ireland props up the bottom of the league table as the area with the least amount of support available for local populations.

This World Stroke Day, the Stroke Association publishes new findings that show that 53% of stroke survivors in the North West did not feel that they received enough support with their recovery after leaving hospital. This is in stark comparison with stroke survivors in the East Midlands where almost two-thirds (60%) of people say they received enough support. These findings illustrate a wide gap between regions in providing rehabilitation and support after stroke.

There are currently 1.2 million stroke survivors in the UK, and these latest findings show that many people feel let down by the health and social care system. The charity’s Lived Experience report is compiled from a large survey of people affected by stroke to find out more about their experiences. The charity has previously published findings on the hidden effects of stroke, the financial impact of stroke and the experience of carers. This final chapter, Rebuilding lives after stroke, reveals that across the UK:

  • Seven out of ten (70%) stroke survivors had problems with speech and communication and more than three quarters (77%) had problems with mobility. Despite this, a third (29%) of people feel that they did not get enough support to learn how to speak again and four in ten (40%) said they needed more physiotherapy.
  • A third of survivors (28%) feel that they are not getting the support required for their daily needs to re-learn skills such as getting dressed and feeding themselves.
  • Stroke survivors are taking their first steps alone: nearly a quarter (22%) of stroke survivors feel the care they received after leaving hospital did not help them cope.

Father of two Phil Woodford, now 48 from Catterall, had two strokes in one weekend at the age of 45. Phil spent three months in hospital having intensive physiotherapy and it took about a month for him to get his first movements back.

Phil suffered his strokes says that although he still hasn’t regained all his physical skills, it is the mental challenges that have been the hardest to deal with.

Phil explains: “A stroke changes not just the survivor’s life overnight but also their family’s. I had never had bad or negative thoughts before but I started feeling suicidal as I couldn’t see much of a future. I couldn’t cope. I actively planned to do it twice, but was able to bring myself round by thinking about the good things in my life, especially my family, my dog and friends. I also became emotionally labile and would cry at anything. I was scared, angry, upset and frightened.”

While Phil praises the NHS for the treatment of his stroke, he says the thing that is lacking is the psychological support.

He says: “I have got a lot of my physical movement back but I feel like I have lost part of my life. I saw my GP and told her about the suicidal thoughts and she referred me for mental health support but it was rejected and they just said to adjust my anti-depressants. I ended up going private to the Priory in Bury and it has been a bit of a lifesaver as they really helped me and realised I had aspects of Post-Traumatic Stress Disorder and severe depression. When the depression comes I just want to crawl into a ball and be alone.

“I have been treated with talking therapies and I feel more positive about the future. It will be a different future from the one I imagined, but I feel more positive.

“For a while, I felt like a failure, but I have got over that now. There is one good thing that has come out of the stroke and that is it has made me realise the important things in life. I spend much more time with my children and am happier.

“I think psychological support and rehab should start as soon as a stroke is diagnosed, to help stroke survivors overcome the emotional impact of their stroke.

“I’ve now been able to have counselling with my local mental health provider and must say thank you for helping me at another low point. I’m taking part in a weekly stress management programme with MindsMatter (NHS) which I’m finding helpful too. I’m also working hard to get fit and lose weight which is having a positive impact on my life especially my mental health. I feel it’s important that survivors help themselves too where they can, however small a change.”

Juliet Bouverie, Chief Executive of the Stroke Association, said: “Stroke happens in the brain, the control centre for who we are and what we can do. It changes lives in an instant, robbing many stroke survivors of their mobility, their speech and often their independence. We know there are hospitals, stroke units and dedicated stroke professionals leading the way for stroke rehabilitation up and down the UK.

“But there are still thousands of stroke survivors being let down by the health and social care system when they leave hospital, because of a postcode lottery that needs to be overcome. This is putting people’s recoveries at risk. Surviving a stroke is the first challenge; recovery is tough, but it is more likely when stroke survivors can access the full range of support services they need, and deserve, to rebuild their lives after stroke.”

The Lived Experience of Stroke report also exposes the realities of living with stroke:

  • One in four (26%) stroke survivors report not receiving enough emotional support leaving them struggling to cope.
  • One in three (31%) stroke survivors feel their support focused on their medical condition and not them as a person.
  • Over half (51%) of stroke survivors who also had other health conditions feel there was more support available for these other conditions than for their stroke.

Juliet continues: “I know it takes a lot of effort and determination to keep going with rehabilitation after a stroke. But with the right specialist support and a ton of courage and determination, the brain can adapt. Even months and years after a stroke, it’s possible to make a recovery.

“We want everyone affected by stroke to have access to the support they are entitled to as laid out by the national clinical guideline for stroke. Thanks to the last National Stroke Strategy we have seen drastic improvements in hospital stroke care in England. Other UK Nations are also taking steps forward in hospital-based stroke services. Now, the same priority must urgently be given to rehabilitation and long-term support, no matter where you live. No stroke survivor should be denied the chance to rebuild their life.”

“We’re here for everyone affected by stroke. We offer vital support and information through our Stroke Helpline and My Stroke Guide, our online community of over 11,000 people affected by stroke. I’d also encourage all stroke survivors to refer to the patient-friendly version of the national clinical guideline that we developed with the Royal College of Physicians (www.stroke.org.uk/stroke-care) so that they know their rights to rehabilitation and ongoing support.”

Marion Walker MBE, Professor of Stroke Rehabilitation at the University of Nottingham, said: “All too often we hear of individuals being discharged from hospital into a vacuum of care, knowing little of the available services or how to access them. However, we now know there is much that can be done to support stroke survivors’ recoveries. We know our health care system has severe financial restrictions but we need to find creative ways to ensure stroke survivors have the necessary professional help they need. I have seen the benefits of good stroke services and want all families touched by stroke to have the best care possible.”

The Stroke Helpline (0303 3033 100) offers information and support to people who have been affected by stroke. For more information about the Lived Experience of Stroke report – Rebuilding lives after stroke – visit www.stroke.org.uk/livedexperience

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