Hansard

I thank Bruce Crawford for securing the debate.

I suspect that being informed that you have been diagnosed with a neurological condition is shocking. You must feel that you will never be able to cope with what life has dealt you. Overwhelming feelings of sorrow, anger and unfairness would suddenly appear.

Eventually most people adjust to their new lives, but often only with the support of organisations such as Sue Ryder, which provides hospice and care at home for people who are facing a life-changing diagnosis. As well as providing expert medical care, Sue Ryder also provides emotional and practical support, from personalised care through to advice, education and support services, to help improve the lives of individuals, including carers and their families. Its knowledge and insight is vital if we are to improve services for people with neurological diseases, and I welcome the findings of its report.

The first report published by Sue Ryder, in 2016, identified a lack of consistent data on the number of people with neurological conditions. Clinical standards for neurological services were not being followed, and the vast majority of health boards did not have a service delivery plan despite that being required by clinical standards.

If we fast-forward to 2017, its report published in September aimed to establish how much progress has been made and what difference the integration of health and social care was making to the lives of people with neurological conditions.

Disappointingly, it found that health boards still do not have a neurological service plan in line with national clinical standards. Six health boards stated that they had no plans to develop joint plans with local authorities, despite the national and local policy direction to integrate health and social care services.

When I was elected last year to the Scottish Parliament, I was made aware of NHS Lothian’s Lanfine service by a constituent with multiple sclerosis who had used the service. He lived on his own and appreciated the respite care that was provided by the Lanfine service. He particularly enjoyed the environment where he could talk with people and discuss their condition. However, in 2010, NHS Lothian commenced the process of redesigning the service. Key elements of the redesign included a reduction in bed numbers from 33 to 10; an outreach team that, when fully established, would have more than seven staff; a new carer support officer; and a fund to support carers with breaks from caring.

NHS Lothian has assured me that cost has not been the driver during the redesign; instead it wanted a service that was fit for the 21st century. That is all well and good, but I discovered that six years on from the start of the redesign, there are still outstanding vacancies in the outreach element and on-going discussions about the remaining posts.

I accept that many people want to be treated in their homes and I welcome care in the community, but in my view the redesign has not ensured better local health care and faster access to it, but has made a vulnerable group even more vulnerable, and we simply have not learned the lessons.

I welcome the minister’s intent to produce an action plan, and I am pleased that acknowledgment is being given to the need to improve services for people living with neurological conditions. However, when I read the Sue Ryder report, I was struck by the lack of data on people with neurological conditions and their use of health and care services. Bruce Crawford picked up on that. Therefore, I ask the minister to ensure that any changes that are recommended in an action plan are evidence based and effective. There is no point in producing an action plan before we have a good, clear view of the services that we have at the moment and what is and is not working. We need to look at what local authorities are doing and ensure that everyone in Scotland gets the service that they require.