More needs to be done for stroke survivors 10 July 2018 A new report released today looking at standards of stroke care within the NHS in Scotland demonstrates a disappointing lack of improvement in community based care and support. Stroke survivors are not being enabled to live the best lives they can following a stroke according to Chest Heart & Stroke Scotland (CHSS). Paul Okroj, Director of Communications, CHSS said, “Every single day 25 people have a stroke and it’s the single biggest cause of disability in Scotland. Many people experience fear and isolation and are struggling from the impact of having a stroke on their lives. It’s disappointing that there is a continuing lack of progress in rehabilitation each year and people are not getting the care and support they need” “With 124,000 people in Scotland living with the impact of stroke after diagnosis, the decline of access to on-going rehabilitation and support for people living in our communities is alarming.” The Report has shown that progress has been made in acute services in hospitals but that there has been a lack of evidence regarding the support for people transitioning back into the community and ensuring that people achieve what matters to them following their stroke. CHSS would like to see routine measurement of long term outcomes for stroke survivors that are focussed on quality of life. Paul explained, “The Scottish Stroke Improvement Programme is working to ensure that stroke survivors have better lives and better outcomes, however across Scotland there is variation in the standard of stroke care. CHSS’s new strategy, No Life Half Lived, will work in partnership to address the unmet needs of people who are living with our conditions in Scottish communities to support people to live their lives to the full. By 2021 we will double the number of people we support through our No Life Half Lived Support Service, increasing the support available through our specialist nurses, rehabilitation support, community groups, volunteering, advice and information.” A dramatic change to stroke care in Scotland has been the complete withdrawal of thrombectomy procedures from Scottish hospitals. In Scotland, a national committee has been established to plan a Scottish thrombectomy service, but the process is slow and consequently some patients have been left with worse outcomes and significant disability after a stroke. In 2017, only 13 people received this treatment, and currently no centre in Scotland is providing this. The Scottish Stroke Care Audit identifies around 600 Scots per year as potentially benefiting from this life changing treatment, and as Stroke remains one of greatest health challenges of our time this situation is unacceptable. Paul Okroj, said, “Chest Heart & Stroke Scotland alongside The Stroke Association are calling for the provision of thrombectomy in Scotland to be tackled as a priority by the Scottish Government, with national funding identified by the NHS. Those eligible stroke patients in Scotland deserve the same access to this life-changing treatment as the rest of the UK.” “If thrombectomy is not carried out, those having the most severe types of stroke are likely to be more disabled when they leave hospital and less able to care for themselves than people who have had a thrombectomy. This will increase the length of their recovery and ultimately increase demand on health and social care resources.” “For those people left with difficulties, rehabilitation and longer term support can really enhance their quality of life. We help people on their return home from hospital and provide them with the support they need to live their lives well.” Fiona Dickens, 64, suffered a stroke 9 years ago on New Years’ Eve. Fiona was out shopping when she collapsed on the pavement in the snow. Passers-by helped her to her car on the street and when her husband Paul returned to the car and found Fiona very confused. Luckily people stayed with her and were able to explain what had happened. Paul quickly realised she had had a stroke and rushed her to hospital. Fiona was admitted, diagnosed quickly and thrombolysed. Fiona felt very confused around this time, she was left with aphasia; she had no speech. She was unable to ask questions about what was happening to her or even speak to her husband or son. Fiona attended rehabilitation and stroke therapy for several months. Once home Fiona found that her communication and confidence had plateaued. Fiona began to attend CHSS’s Rehabilitation Support service and was given one to one communication support from the coordinator. She felt her speech improved greatly; “My speech improved so much with their help. I can’t thank them enough. CHSS got involved and stayed involved.” Fiona now volunteers in one of CHSS’s shops and at one of their Peer Support Groups where she helps support others with communication difficulties following stroke. Fiona continued, “Life would be boring if I didn’t have CHSS. I would be more isolated and would have less to do.” Thrombectomy in Scotland The annual report of the Scottish Stroke Care Audit indicates that each year in Scotland, at least 600 patients are missing out on a vital treatment that has the ability to dramatically reduce levels of disability for people experiencing the most severe type of stroke. Despite research demonstrating that people who have benefitted from thrombectomy, a highly-specialised procedure that involves removing blood clots from the brain with a thin tube, have lower levels of disability and are able to better care for themselves after their stroke than those who have not received it, no resources have been allocated to carry out the procedure within Scotland. The procedure has been approved by NICE, is recommended by the Royal College of Physicians and Scottish Intercollegiate Guidelines Network (SIGN) guidelines, is proven to be cost-effective, and was highlighted in the 2017 Scottish Stroke Improvement Programme report as offering a major ‘next step’ in stroke care in Scotland. Between NHS Greater Glasgow & Clyde and NHS Lothian, a small number of thrombectomies had been taking place since 2015, but these have now stopped due to an absence of funding, which has meant a shortage of trained staff and suitable facilities. This lack of availability places Scotland far behind both England - where 25 hospitals deliver the treatment and £100m has been identified to develop this further - and the Republic of Ireland -where between 200 and 300 people receive a thrombectomy each year – in adopting the life-changing procedure. In Scotland, a national committee has been established to plan a Scottish thrombectomy service, but the process is slow and, in the meantime, patients are left with far worse outcomes after a stroke than they should be. We are calling for the provision of thrombectomy in Scotland to be tackled as a priority by the Scottish Government, with national funding identified by the NHS which would enable centres in both the north and south of the country to provide this vital treatment.