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Norah Fry Centre - Medication Matters Project for People with Learing Disabilites

This project meets the needs of people with learning difficulties who regularly take medicines.
Region: National
Condition.Therapy Area: People with learning disabilites
Main discipline involved: All
Contact details
Liz Folkes
Norah Fry Research Centre
3 Priory Road
Tel: 0117 9238137
Fax: 0117 9466553
Geraldine Mynors
Head of Projects
Medicines Partnership
1 Lambeth High Street
Tel: 020 7572 2476
Project description
This project began as a research study to find out the rationale for prescription of psychotropic medication for people with learning disabilities, and the different levels of understanding of these medications.
The research part of the project will be completed by September 2004, and has resulted in the development of two guides for people with learning difficulties which can be completed by them in conjunction with their carers and /or a health professional for any medicine which they are taking (whether psychotropic medication or not). These guides are:
  • A booklet for people with learning difficulties, their families or carers where they can record information about their medications.
  • A decision making tool for people with learning difficulties to help them make informed choices about taking the medications they are prescribed.
Further resources developed as a result of the project are:
  • A checklist of things to ask the doctor about medication which can be used by people with learning difficulties, their families and carers
  • A guide for prescribers of psychotropic medications of things to they should consider when issuing a prescription for psychotropic medication
  • A list of useful sources of information about medications
Medicines Partnership is now working with the Norah Fry Centre to plan the reproduction and distribution of these very valuable guides, so that they can reach as wide an audience as possible. They will be available in downloadable form from April 2005.
Background to the research
Considerable concerns have been voiced regarding the prescribing of psychotropic medicines for people with learning disabilities. Firstly, because of the recent major expansion of psychotropic drug types and usage in this population (Reiss & Aman 1997); secondly because psychotropic drugs may be used improperly to "control, modify or normalise" an individual (Kalachnik et al 1998); and thirdly because many of the side-effects of psychotropic medication (such as excessive tiredness, social withdrawal, or movement disorders) can contribute to social exclusion.
People with learning disabilities are a vulnerable population with a historical pattern of being subject to excessive medication (Kalachnik et al 1998). Evidence suggests that the rate of prescription for psychotropic medications is far in excess of the expected rate of psychoses for the population of people with learning difficulties (Robertson et al, 2000) and that the drugs are largely used to control difficult or challenging behaviours (Molyneux et al, 1999). Yet randomised controlled trials provide no evidence that psychotropic medication helps adults with learning difficulties and challenging behaviour (Brylewski & Duggan, 2001). Indeed there is a well-documented history of their adverse effects (Christian et al, 1999).
Over the past decade, more emphasis has been placed on the legal rights of people to be informed about their treatment and to make decisions for themselves wherever possible. Yet knowledge of medication in people with learning disabilities has received scant attention in the research literature. Research about the understanding of people with learning difficulties about any prescribed medication (Arscott et al, 2000) and about lithium (Clarke & Pickles, 1994) has suggested poor knowledge about many aspects of their medication.
We are unaware of any previous studies that have explored what people with learning disabilities, and their families or carers, understand about why they have been prescribed psychotropic medication and what the implications of this are for them. The need to fill this gap in knowledge is vital, as if people with learning difficulties and their families or carers are not in full possession of the information about such drugs, it is questionable whether they can be said to be giving informed consent to treatment with medication.
The research project aimed to respond in two ways:
  1. By working directly with people with learning difficulties, their families or carers, and prescribers to explore the different perceptions of why psychotropic medication is prescribed and what understanding people have of such medication.
  2. By designing some clear, accessible checklists of questions that:
    • People with learning difficulties and their families or carers should expect to be fully answered before starting, and during treatment with psychotropic medication
    • Prescribers should be satisfied they have answered before issuing a prescription for psychotropic medication
Fieldwork was carried out in 4 different regions of England designed to provide a geographical spread: Cornwall, Sheffield, Bristol, Oxford.
We conducted in depth individual interviews with:
  • 21 people with learning difficulties who are being prescribed psychotropic medication to stabilise their mood or behaviour. Of these 13 people were living in residential care homes, 4 were living independently in the community and 4 were living with family carers.
  • The carers supporting those individuals. This included paid support staff, family members and learning disability nurses.
  • The professionals prescribing psychotropic medication to those individuals. This included both psychiatrists and GPs.
The topics which we explored during our interviews with people with learning difficulties included:
  • people's knowledge and understanding about their medication
  • what information people have been given about their medication and bywhom
  • what support people receive to take their medication
  • areas where people would like to receive more information and support.
Similar questions were asked in the carers interviews. We also sought their more general views on the prescribing of psychotropic drugs.
As with the carers interviews, all interviews with prescribers were conducted with the consent of the patient concerned. During these interviews the rationale for specific prescriptions and the evidence base or experience supporting their decisions was discussed. Doctors were also asked about barriers to communication and understanding they had experienced with this group, particularly in terms of capacity, consent and concordance.
Ensuring that people with learning difficulties are meaningfully involved in the research process is an essential part of the Medication Matters project.
The research team works with a service user advisory group a group of 5 co-researchers who have learning difficulties. The co-researchers who have been involved in all aspects of the project. As a group they have worked together to produce accessible information about the project. Individual group members have also been involved in interviewing service users and analysing the data from these interviews. They will have a important role in helping to disseminate the project findings.
The project is also advised by a more traditional research advisory group made up of health professionals and carers. This group meets on a regular basis to review the progress of the research.
Organisations involved
The research is being carried out by the Norah Fry Research Centre in association with the Home Farm Trust and Aspects and Milestones Trust.
The Norah Fry Research Centre carries out research into issues affecting the lives of disabled children and adults with learning difficulties and their families. Through our research findings, we aim to influence policy, improve services and support, and empower and inform service users, families and professionals. The Centre is jointly based within the Faculties of Social Science and Medicine at the University of Bristol and currently has around twenty staff drawn from a range of academic disciplines and professional backgrounds.
Home Farm Trust (HFT) is a national charity supporting people with learning disabilities. They provide a range of services including; supported living, registered residential care, day services, specialist services, supported employment, carer support service, transition workshops, advocacy, short breaks (respite care), Information Communications Technology (ICT) training and research.
Aspects and Milestones Trust is a not for profit organisation providing person centred services to people with mental health needs and people with learning difficulties .The trust aims to respond to the changing needs of people through offering a range of choice in where they live, who to live with and what type of opportunities to pursue. Currently the service spans South Gloucestershire, Bristol City and Bath and North East Somerset.
The original research project ran from July 2002 September 2004. Medicines Partnership will aim to publish the guides in collaboration with the research team in September / October 2004, subject to funding.
How will this project provide new learning about the implementation of concordance
One of the primary aims of the project is to improve the provision of information to people with learning difficulties and their carers. Doctors often underestimate how much information people with learning difficulties can understand and want to receive. Conversely the knowledge of carers is often overestimated by prescribers. We will be producing a number of resources that help people to find answers to the questions that they have identified as important to them in a format that they can understand. Access to information is a problem experienced by many people with learning difficulties. An important part of the project will be making service users and carers aware of the resources available.
As a result of our interview data we have produced a short checklist of useful questions to ask the doctor during prescribing consultations. It is hoped that this will empower patients to be actively involved in treatment decisions. Previous research suggests that many GPs lack confidence in communicating with patients with learning difficulties so we are also producing a guide for prescribers. This will highlight some of the things that they should consider when prescribing for people with learning difficulties in order to encourage shared decision making.
The project will promote the need to provide more opportunities for patients to discuss their medication. In order to give structure to these discussions and to help people with learning difficulties make an informed decision about their medications we will be producing a decision making tool. This will be based on the principles of similar tools promoting concordance such as Ottawa Health Research Institute Personal Decision Guide.
How will the project be evaluated
The project is a qualitative research project that uses a grounded theory approach (Glaser and Strauss, 1967). This is particularly useful where little or no previous work has been done. It allows us to discover what problems exist in a social setting and the processes people use to handle them. In keeping with a grounded theory approach, the research design outlined provides the boundaries and direction of inquiry, while allowing for changes as understanding increases in the course of the research (Stern 1985, Sandelowski et al 1989)
With the participants' permission, all the interviews were tape recorded and transcribed in full. The content of the interviews was then analysed using the MAXQDA software programme. Following the process of grounded theory, data analysis was undertaken concurrently with data collection. Ideas concerning the interpretation of the data were formulated, tested and redeveloped using a process of constant comparison of the data.
This analysis was used to inform the content of the resources produced, and they were then further tested with research participants.
How is the project funded
The original research project was carried out by the Norah Fry Centre in association with Home Farm Trust and Aspects and Milestones Trust. Aspects and Milestones have received funding from the Community Fund (formerly the National Lotteries Charity Board ) to do this work from July 2002 to September 2004.
Medicines Partnership will be funding the development of online versions of the guides.