The UK Stroke Assembly is the largest gathering of people affected by stroke and aphasia in the UK. Run as a series of annual events across the UK, the Stroke Assemblies provide an opportunity for those affected by stroke and aphasia to have their say, influence future campaigns, share experiences and hear developments in stroke care and research.
At the 2018 UK Stroke Assembly events in Manchester and Essex, those affected by stroke told us that these are the key messages they want stroke professionals to be aware of.
- More work is needed with other support organisations to provide a more integrated approach to care and long term support.
- Hearing other people’s experiences of stroke and the achievements individuals have made in their recovery and taking action on stroke is very important and beneficial, giving inspiration and hope to others in their own recovery.
- The medical profession should not remove ‘hope’ from anyone’s recovery.
- Those living with stroke want to know more about updates in stroke care and research and how they can get involved.
- More needs to be done to focus on everyday tasks that people living with stroke have problems with, such as completing forms and navigating the benefits system. These issues have a huge impact on mental health.
- The effects of stroke are not hidden to those living with them every day.
- More support is needed for carers and to recognize their value.
- There continues to be ongoing frustration with the variations in stroke treatment and support across the UK, in particular around psychological support and the impact that this has on stroke survivors and their families.
These key messages were shared with stroke professionals at the UK Stroke Forum in December.
There are strong links between the UK Stroke Assembly and the UK Stroke Forum and it is important that messages from each event are shared with the audience of the other.
The links between the two events are aided by the UKSF Service User Reps who act as a patient voice for the Forum. This link enables stroke care professionals to have a greater understanding of the priorities and concerns for those living with stroke, and in return stroke survivors and carers have increased awareness about the breadth of the research being carried out into stroke.
At the UK Stroke Forum (UKSF) in December 2018, Liz Topliss, Stroke Association volunteer and UKSF service user rep, shared key messages from the UK Stroke Assembly events with healthcare professionals, highlighting views on the topic of psychological support after stroke.
A survey led by the UKSF service user reps at the UKSA events 2018 on psychological support found that:
- 38% of those interviewed received some level of psychological support after their stroke
- that there are lots of variations in the level of support provided
- support is needed for both stroke survivors and their carers and families
- 77% of those who had psychological support found this helped their recovery and adapting to life after stroke.
Fellow UKSF reps Iain and Anna Bridle (pictured with Liz) shared their own experiences of psychological support from a stroke survivor and family perspective. ‘I was diagnosed with post-traumatic stress syndrome after my stroke’ said Ian. The key messages from this session helped to acknowledge the continued frustration with the variations in stroke treatment and support across the UK, in particular around psychological support and the long term impact that this has on stroke survivors and their families.
Dr Shirley Thomas, Lecturer in Rehabilitation Psychology, University of Nottingham, went on to quote that 50% of stroke survivors suffer psychological effects after stroke. Dr Thomas called upon her peers to recognise these signs and address them. She also emphasised that mood tests need to be timely and feasible for those with communication difficulties. Throughout the UKSF event, talks on psychological support had featured strongly on the programme and had all been well attended and well received by stroke professionals.
To continue the important links between both UK Stroke Forum and UK Stroke Assembly, teams will continue to communicate regularly and identify opportunities for closer working. This will ensure your messages continue to be heard by professionals, encouraging future developments in research and stroke care.