Torquay stroke survivor says ‘vital’ stroke recovery service must be saved

A retired Torquay hotelier who was “floundering” after having a stroke has hit out at the decision to axe the Stroke Association Stroke Recovery Service which helped him and his wife cope.

Bob Perrin and his wife Lesley say they felt “abandoned” when he came out of hospital struggling to understand and deal with the effects of the stroke.

Bob, 70, and Lesley, 64 are devastated that NHS Devon and Plymouth City Council have told the charity that funding for their service will end in December.

Bob had his first two strokes in 2021 but the effects of his third stroke in August this year were different and the emotional impact was huge.

“Once Bob was discharged from hospital we felt we were just left to get on with it,” said Lesley.

“We lurched from day to day just trying to get through, fearful for what might come next and not knowing where to turn. We were floundering and didn’t even know how or where to get help or even if help was available.

“Then a very lovely lady called Cathryn from the Stroke Association Devon Stroke Recovery Service contacted us.

“She spent some time on the phone talking with us about my husband's stroke but more importantly, really listening to him, asking how it has impacted on his life, on both our lives, and advising us on how to move forward, as well as signposting us to support groups we may find useful.

“She gave us valuable advice and has offered to liaise with the hospital as we felt were getting nowhere and being bounced around from department to department.

“I really cannot stress highly enough how valuable her call was to us. Not only on a practical level, which was amazing but also on an emotional level.

“She encouraged my husband to talk about his feelings and symptoms. Symptoms he had kept hidden from me as he thought he was going mad.

“She normalised them, explaining that it was common for people with the type of stroke he had to go through what he was experiencing.

“The relief he felt from hearing that was immense and has also made him more able to share how he is feeling on a daily basis. Had she not asked the right questions, he would still be struggling to cope alone with it.

“She also asked how I was doing. Just having another person ask how I was coping made me very emotional. For weeks I have had to be the strong one and hold it all together but then someone who understands how difficult it can be for carers was offering to support not only my husband but me too.

“The relief of discovering I wasn’t on my own after all was overwhelming. I hadn’t realised until then how much my mental health had been suffering as a result of my husband’s stroke.

“Cathryn then followed up her call by sending an email detailing everything we had talked about, sent information leaflets as well as contacts that we may find useful.

“We went from feeling completely abandoned to feeling supported. The weight it has taken off my shoulders alone from a carer’s point of view cannot be overstated.”

The couple are urging people to sign a petitionlaunched by follow stroke survivor Graham Devaney calling for the service to be saved.

www.change.org/SaveDevonStrokeRecoveryService

“This news is devastating to us. I have no doubt to lots of other people who have had a stroke tear their lives apart too.

“I understand times are difficult and budgets are tight but this service is far too important to let go. I would ask NHS Devon to please reconsider this decision as it will have a major negative impact on the lives of so many people who struggle daily with the devastating and far-reaching effects of a stroke.”

Intense 1-1 support

The Devon stroke recovery service has been running for approaching 20 years and each year around 1,470 stroke survivors are referred to it. Of these, more than 875 a year receive the more intensive 1-1 support they and their families need.

There are more than 32,000 stroke survivors in Devon, making the county one of the top three highest areas in the UK for stroke prevalence - the proportion of the population living with the condition.

Jacqui Cuthbert, the Stroke Association’s associate director for the South West and Channel Islands, said:

“We have had to inform the 500 stroke survivors we’re currently working with that their support will end. It’s devastating for them and unthinkable for the 2,500 people every year who will be hit by stroke in the county.

“Because a stroke happens so quickly, people often leave hospital without being completely sure what's happened or why and totally unprepared for the many challenges that lie ahead.

“NHS Devon says other services in the county will continue to support stroke survivors but these organisations are not stroke specific and do not understand the complex and interrelated needs of stroke survivors and their families.

“Our Devon Stroke Recovery Service provides tailored support from hospital to home via a designated coordinator, who will address the long-term practical, emotional and communication needs of stroke survivors, their families and carers.

“The Stroke Recovery Service is a vital part of the clinical pathway for stroke survivors, easing pressures on clinical teams and delivering better patient outcomes.

“The cost per stroke survivor is relatively small, compared to the far greater cost to the system where people need NHS treatment for poor mental and physical health which may even lead to a second stroke, something that survivors fear the most.”

As well as signing the petition, people are being urged to contact NHS Devon.

NHS Devon ICB

• Telephone: 0300 123 1672 between 10am – 4pm, Monday to Friday

• Email: d-icb.patientexperience@nhs.net

• Post: Patient Advice and Complaints team, NHS Devon, Aperture House, Pynes Hill, Rydon Lane, Exeter, Devon, EX2 5AZ