West Sussex ABI

We mean anyone who “acquires” an injury in adulthood through accident or injury, or through illness such as encephalitis or brain tumor. We need to look closely at links with stroke services which are predominantly aimed at older people but do include some younger adults. We are not focusing on children’s services although there is a problem for people moving out of children’s services into adult services. The other area we are not focusing on is conditions such as Parkinson’s disease, Alzheimer’s disease or other conditions which tend to deteriorate over a longer period of time.

Do we know what the main problem areas are?

Yes we do. The majority of people who have experienced a brain injury suffer from a combination of physical, cognitive and emotional difficulties. Not everybody experiences all of these, and for many people it is the cognitive and behavioural changes that are hardest to live with. Although there are very practical problems if you have a physical disability, at least this is often recognised by services. The complaint for many people with “hidden disabilities” is that services do not acknowledge their needs.

Do we know what is needed?

Yes, broadly speaking we do. There is a general consensus on the type of services that are needed and there are numerous reports both at a national and local level to refer to. What we are looking for is a continuum of care from the acute hospital setting, through rehabilitation and extending into a range of community rehabilitation and support networks and some long-term provision for both housing and activities for people. We know that there are a small number of people who need highly specialist care which may not always be provided within the county, but the majority of our services should be provided locally for people in West Sussex.

Do we know the number of people with brain injury in West Sussex?

We have some idea of how many people with brain injury live in West Sussex and we are aware of most of the new cases that occur each year.

Do we know what we have got?

Yes we do, and we recognise it is not enough. People in West Sussex tend to receive acute care either in Brighton at the Royal Sussex County Hospital, Worthing, Chichester or Crawley. Specialist neurosurgery is at Hurstwood Park Hospital at Haywards Heath although some people are transferred to London if beds are not available. Inpatient rehabilitation currently takes place at Southlands Hospital in Shoreham and at Donald Wilson House in Chichester but these two centres are not able to provide a service for all of the West Sussex residents who need it. Some people are therefore sent out of district which is not ideal and we are looking to develop partnerships with organisations who can provide a service in the local area. At the moment we have very little in the way of community services. Some local areas are fortunate enough to receive a community rehabilitation team approach but this is not available throughout the county. We also have some access to longer-term support through supported housing and day services but this too is patchy and we want to explore this further.

Why now?

There have been lots of initiatives both at the local and national level to try and provide services for people with brain injury. The next big initiative is the National Service Framework for Long Term Conditions - NSF.