Information and support for self-management

Many people affected by neurological conditions will want to self-manage their condition as far as possible. There are a range of information resources that can support them in this. Information about the condition itself will be important (See Information on specific conditions, treatments and procedures) and also information about sources of local and other support to enable people to take a full part in society. See Section Three andSection Five. 

In addition, there are:

  • “Expert patient” courses which aim to provide skills and knowledge to facilitate confidence and enable people with long-term conditions to manage their own care more effectively.
  • Local (condition specific) support groups for many conditions where people can talk to those affected by similar conditions and seek peer support.
  • A number of generic and condition-specific virtual support networks where people can communicate, share and learn from people in a similar situation to themselves.
  • Health professionals who are skilled in supporting people to self-manage their own care as far as possible. Community matrons are a key resource in this respect.


Expert patient courses
 These are generally six week generic courses that coach people with long-term conditions through a series of activities to empower them to self-manage. The courses include activities to help people undertake action planning, goal setting, stress management and to manage fatigue.

Local courses can be found through expert patients. There is also an online version of the course. 

Local support groups
 Many people talked about the importance of having information about local support groups when we were developing this toolkit. They are valued for the opportunity they provide for people affected by neurological, and other long-term, conditions to talk to others with a similar condition and problems, and also for the local knowledge that they have about services and sources of support and advice.

The services offered by local support groups varies, but some local branches of national voluntary organisations provide a wide range of services to support people with specific conditions including help with equipment, access to leisure and other facilities, transport and advice.

There are support groups for many conditions. Most of the large condition-specific organisations (e.g. MS Society, Parkinson’s Disease Society, Headway, have local groups). The best way to find these is through the head office of these organisations. The Neurological Alliance has a list of organisations and links to all their websites as does the Long-term Medical Conditions Alliance. The home page of most organisations’ websites has a facility to find sources of local support.

Obviously the rarer the condition, the less likely that there will be a very local support group, but people affected by a neurological condition, including carers, may still benefit hugely from occasional contact with a more distant group.

Virtual support
 There are a growing number of websites and “chat room” type facilities where people can get online peer support. This is particularly valuable for those who have less common conditions, where there may not be a local support group and for those who find it difficult to participate in face to face support groups (due to mobility or speech difficulties, family or work commitments, fear of social stigma etc). 

The DIPEx (Database of Individual Patient Experiences) website is aimed at patients, their carers, their family and friends and health professionals. It contains interviews with people about their own experiences of serious illness, important health problems or health related matters. The interviews are linked to reliable information about each illness or problem as well as including questions and answers that have been raised during the interviews. The interviews are analysed and organised into themes or topics (e.g. Diagnosis, Signs and Symptoms, Treatments), to help people easily find an experience similar to their own on the site. (note: this is not an interactive facility so people do not communicate with others on the site). 

Patients Talking is a website that allows people to confidentially write a diary about any health condition, and read diaries written by others with similar conditions. It aims to prevent people feeling alone and allow them to compare notes. 

Cancer buddies is a site for people with cancer (including brain tumours) where they can get online support through a discussion forum and also be teamed up with an online “buddy” who is matched to them through the site.

There are a number of chat rooms related to specific neurological conditions. For example: 

Brain Tumour Action  
Sub-arachnoid haemorrhage site with discussion board. This site also has some personal experiences quotes.  

BUILD for people affected by motor neurone disease.  

Jooly’s joint is a website for people affected by MS which is run by a woman with MS. It has an online message board. 

Different Strokes is an organisation for younger people who have had a stroke has an online message board.

The Progressive Supranuclear Palsy Association have an online forum for people affected by PSP. 

Community Matrons
People with a serious long-term condition or a complex range of conditions are now being offered the chance of support from a community matron – a senior nurse who will not only provide nursing care, but will also plan and co-ordinate ways of meeting all their health and social care needs. A  leaflet is available from the Department of Health which gives information on how people can benefit from the help of a community matron and who is eligible for it.

Case managers
 Case management draws on the involvement and valuable skills of qualified and regulated professionals such as therapists, nurses or social workers. Case managers are employed in health and social service organisations, but also privately and in insurance companies.

The case manager assesses the needs of individuals and their families and identifies resources which can be made available to them in order to obtain maximum benefit for the individual, the family and the budget holder. A care plan is prepared which is tailored for each individual.

Case managers for people with brain injury can be found through the British Association of Brain Injury Case Managers.