Tackling dual diagnosis: getting the balance right
Creating a specialist service for people with learning disability and epilepsy in Birmingham
- Why was the initiative launched?
- What was done?
- What were the immediate needs?
- What is the available clinical evidence in managing learning disabled people with epilepsy?
- How to address the immediate needs?
- Is it working?
- Tips for success
- To find out more - contact a member of the team
Why was the initiative launched?
In 1997 staff in the Birmingham Services for People with Learning Disabilities became increasingly concerned about the quality of care and treatment being provided to people with a dual diagnosis of learning disability and epilepsy. There was a strong feeling that management of epilepsy was being neglected. Two national publications had encouraged action. The Department of Health in 'Signposts for Success in Commissioning Services for People with Learning Disabilities' argued for recognition of epilepsy care as a specialist need. Later the British Epilepsy Association (BEA) offered guidance on an ideal epilepsy service. A growing local consensus urged that something needed to be done to improve the care and treatment for this group of clients.
What was done?
Initial negotiations to create an Epilepsy Liaison Team were led by a local consultant psychiatrist and two community nurses with special interest in epilepsy. After lengthy discussions, two part time community nurses were each seconded for nine months to acquire the necessary skills, training and experience in managing epilepsy. External funding enabled the nurses to acquire the Diploma in Epilepsy Care (Distance Learning Pack, Leeds University). The team also included a specialist registrar and a representative from the Trust's Clinical Governance Team.
The team's objective was to provide a specialist epilepsy service and improve the quality of life of people with learning disabilities and epilepsy. Improved management, monitoring, seizure control and education would be elements of their work. To develop the new service, the team first set out to answer three questions.
What were the immediate needs?
A survey of community nurses reinforced concerns already being voiced by staff in the Trust. These were echoed in an informal survey of consultants' practices. There was:
- Significant variation in practice.
- No agreed protocol to guide the assessment of clients.
- Lack of clarity about the treatment and monitoring of epilepsy care.
- No protocol for referrals to specialist epilepsy services.
The results highlighted the need for training of nursing and non-nursing staff. A survey of clients and carers pointed at the unsatisfactory nature of information provided at the time of diagnosis or later, about prescribed medication, social and employment issues and support organisations. There was a tendency for information to be provided verbally. Few leaflets were available.
What is the available clinical evidence in managing learning disabled people with epilepsy?
The paucity of evidence related to this group of people had been long apparent. Most of the literature dealt with epilepsy management of learning disabled clients in hospital settings and the majority of clinical studies on efficacy of medical treatments had been carried out on the general population. These findings are, naively, extrapolated to the learning disabled population who are already neurologically impaired and hence more vulnerable to the adverse effects of medication.
The team was not able to identify an accessible source of information on learning disability and epilepsy. In view of this they decided to assemble a collection of relevant research papers and publications to support their work.
How to address the immediate needs?
The results of the survey informed the design of a training programme for community nurses and other clinical staff. Two levels of training are available. An initial course for non-nursing staff covers basic awareness of epilepsy. More advanced courses for nursing staff, in addition to the basics, include the management of Non-Epileptic Attack Disorder (NEAD), Sudden Unexplained Death in epilepsy and epilepsy syndromes. Pharmaceutical companies have funded this aspect of the work.
Following the success of the early stages, assessment protocols are now being tested and information packs for clients and carers being prepared. There are plans to build on the current courses and offer more specialised training.
Is it working?
Since the new service was launched , the number of clients seen has risen by over 20% (from 82 to 101), a sound endorsement of the need for a specialist service. Specific improvements can now be seen in three clinical areas as well as other aspects of the team's work.
Monitoring has improved by the use of seizure diaries: it is more objective and precise. Carers and clients are better informed about individual seizure types including NEAD resulting in improved reporting.
There are several indicators of improved quality of life for clients and carers - see box.
- Fewer aggressive outbursts are reported. Carers can manage situations more easily
- Clients have easier access to community facilities with improved opportunities in life experiences and improved confidence of carers in taking clients out.
- Improved seizure control with reduction in seizure frequency (10%) and seizure severity (6%)
| Birmingham Services for People with Learning Disabilities: Epilepsy Liaison Team |
| Some carer’s comments |
| P is alert during the day now, whereas previously, she was asleep most of the day. |
| P is calmer, less aggressive and easier to manage since the change in his medication. |
| S is a totally different person now. He seems to have woken up to a whole new life. |
Progress is being made in rationalising medication . Reduction of medication is always discussed with carers if patient has been seizure free for over two years. The majority have been reluctant to have medication reduced and some changes have not been successful. Similarly some patients on medication such as phenytoin and phenobarbitone are being substituted with newer anticonvulsants in order to reduce side effects such as sedation and gingivitis. But changes have not been made where seizure control has been good and side effects minimal.
The Epilepsy Resource Centre and Clinical Database is taking shape. It is providing easy access to publications, books and videos, research papers, relevant guidelines and other sources of information. Currently over 400 relevant papers have been identified, indexed and summarised. Search tools are being developed to enable staff across the Trust to search for information on epilepsy through an intranet. If progress is maintained both facilities will be made available to other Learning Disability Services.
The training courses for community nurses have been well received. So far over 50 nurses from the Trust have received training from the Epilepsy Team. Pre- and post-training questionnaires show significant improvement in the scores of those participating.
The work has prompted the creation of a special interest peer group for nurses: the Focus in Epilepsy and Learning Disabilities group (FIELD). This was set up in 1999 by Julie Shumary to provide support, enable the sharing of information and promote good practice. The group has met five times and more meetings are planned. Membership includes nurses with a special interest in epilepsy from organisations across Central England. Topics being addressed include protocols for emergency treatment in epilepsy and consent to treatment. FIELD aims to offer a collaborative approach to epilepsy care and is planning a conference this year as a forum for sharing best practice.
Tips for success
- Don't underestimate the lack of understanding about the care and treatment of people with a dual diagnosis of learning disability and epilepsy.
- Devote time and effort to forging new links with colleagues.
- Explore different ways to develop new teams, for example, through secondments.
- Diagnosis of epilepsy in this group of people is complex: a full review of new clients is essential.
- Work constructively with pharmaceutical companies in ways that avoid complaints of bias, like the supply of educational material, advice on auditing and using computer programmes related to epilepsy management.
- Develop ways sensitive to the needs of local groups when addressing language barriers. Written material may not be the answer.
To find out more - contact a member of the team
Wendy Church, Community Nurse
Julie Shumary, Community Nurse
Dr. Kyaw Thinn, Consultant Psychiatrist
Epilepsy Liaison Team
Birmingham Specialist Community Health NHS Trust
St. Stephen's Centre
171 Nineveh Road, Birmingham B21 0SY
Telephone (0121) 551 1613
Fax (0121) 551 8946
ImpAct bottom line
- Be patient and persistent - creating effective services for small groups takes time. There are no quick answers.