Background and Aims

Through feedback and conversations with stroke survivors, carers and staff, we identified gaps in long term support across Wales. There was need for more localised peer support and to work with people to help them feel confident and empowered to participate in activities. In response, the National Lottery funded, Community Steps project was implemented between April 2018 and March 2022.

Methods

We worked with partners to offer bespoke activities including: Wales Golf, Bowls Wales, Sailability, Parkinsons UK, Headway and other neurological organisations. In response to the COVID-19 pandemic, the team developed new and innovative ways of delivering services. We worked closely with partners to set up sessions on-line. Ability Net worked with stroke survivors and carers to address digital exclusion issues. The project also included a campaign forum working with decision makers within health boards.

Results

767 stroke survivors and carers referred to the project

New groups, clubs and cafes established

1563 stroke survivors and carers recorded as attending group sessions, face to face and virtual.

7043 attendances recorded at our activities

556 volunteer hours recorded with the monetary value of £7241

Conclusions

The success of Community Steps is due to its ability to flex to needs of stroke survivors and adapt to challenges. Truly listening to stroke survivors and carers ensures they have been able to receive support they need throughout the project. Going forward we'll be running a new, three-year project called Next Steps. The project will build on learnings from Community Steps and stroke survivors’ feedback.

Background and Aims

In Fylde Coast, England, acknowledging the significant mental health challenges faced by people affected by stroke, a collaboration emerged between the local long term conditions Improving Access to Psychological Therapies (IAPT) services and the Stroke Association, focused on developing and testing a group-based emotional wellbeing and support programme for people affected by stroke.

Methods

This was a pilot project, with evaluation built in. The intervention comprised an 8 week online programme. Prospective participants were identified and referred by Stroke Association Coordinators, with referrals made to Mindmatters or Supporting Minds. Those referred, received a welcome call and the referral was accepted subject to eligibility criteria (mild to moderate anxiety or depression). The number of participants was capped at 10. A mixed methods approach to evaluation was adopted. Clinical outcome measures – PHQ-9 and GAD-8 were gathered at each contact. Patient experience forms were used to capture how participants experienced the programme and verbal feedback captured on an ongoing basis.

Results

Programme attended by 7 participants. Some declined group-based support despite being eligible, as they were seeking 1:1 support.

Eighty percent successfully achieved clinical recovery, as reflected in PHQ9 and GAD7 outcome measures.

Qualitative data gave insight into how this translated into participants’ everyday life and how outcomes may have been brought about by the programme.

Conclusions

While a small scale pilot, this evaluation demonstrated that an Emotional Wellbeing Programme, delivered in collaboration between IAPT services and the Stroke Association, has the potential to make a meaningful difference to the lives of stroke survivors.

Background and Aims

Too many people leave hospital with questions about their diagnosis, treatment they received and next steps for their care. These may be discussed in hospital, but stroke survivors tell us they are often overwhelmed at this point, with most attention focused on ‘getting home’, so they struggle to retain the information. We know the value stroke survivors place on feeling fully informed and involved in their care. We also know that having written, personalised information can help to optimise patient outcomes and experience of care and support, and patients are more likely to play an active role in their care and have a truly person-centred experience.

Methods

The Stroke Association UK worked with the Personalised Care Team at the National Health Service England on a new Personal Stroke Record, a template to be filled in together by a stroke survivor, their family, and a member of their acute stroke team before they leave hospital.

Local Integrated Stroke Delivery Networks may already be using something similar to the Personal Stroke Record as set out in the National Stroke Service Model. Where this isn’t happening, we will look to meet this need for access to personalised information.

Results

The template contains information people affected by stroke need (and want) to support their recovery, including information about the acute phase of their treatment and immediate next steps after leaving hospital.

Conclusions

Following implementation and evaluation, the scope could be expanded beyond the acute phase and next steps.