More work is needed to bridge gaps in care for MS sufferers

Consistency needed in providing support across Lothians, says Marl Hazelwood.

THE focus of this year's Multiple Sclerosis (MS) Week which finished at the weekend was the physical, financial and emotional cost of the condition and what the MS Society Scotland can do to "put the pieces together" to help people with these costs.

MS is the most common disabling neurological condition among young adults in Scotland, affecting some 10,500 people.

This means that Scotland has the highest rate of MS in the world. MS is a disease of the central nervous system. There is no cure, but treatments and specialists can help manage many symptoms well.

It is estimated that more than 1500 people across Edinburgh and the Lothians have MS, meaning that thousands more family and friends are affected.

The MS Society Scotland campaigns for better services for people affected by MS, and services in the area have undoubtedly got better in recent years. There are now two MS specialist nurses and a specialist physiotherapist at NHS Lothian who provide excellent care and support, while access to neurologists has also improved.

But social care provision remains inconsistent, with people affected by MS sometimes having to fight for what they need. Social care covers a wide range of services such as aids and adaptations to the home, personal care, respite and residential care. It is a vital element in supporting people with MS to live as independently as possible.

Respite care allows both the person with MS and their carer an essential break. Leuchie House, the MS Society's respite care centre at North Berwick, is well used by local people, with around 50 people staying there each year. It relies on the generosity of the public to provide highly specialised short breaks. Last year the society also awarded more than £40,000 of grant support to people in the Lothians to support them with essentials such as purchasing equipment, making home adaptations or accessing respite breaks. These awards very often "top-up" local authority or other public funding.

This highlights where gaps remain in the services and support that are available to people with MS in the Lothians.

For example, the financial support for respite care that the four local authorities provide varies considerably from person to person. The experience of people before and after diagnosis can also still vary considerably in different areas, often according to how much a GP or other primary care professionals knows about the condition. That is one of the reasons why the MS Society offers training to health and social care professionals.

The services available for people affected by MS locally have certainly come a long way over the last few years. But there is much more that can be done and the MS Society will be at the forefront of working for the necessary changes.

• Marl Hazelwood is director of MS Society Scotland.