Learning disabilities registers are often misconstrued. Stigma and suspicions linger from the past––labelling, segregation, lack of choice. Most people now, however, see registers as a resource for evidence-based practice and person-centred planning. (The term register is used in this article as shorthand for the whole system: database, processes and staff.)
In the mid-1980s, people with learning disabilities began moving out of long-stay hospitals into the community. Initially, little was known about who these people were, where they lived or what services they needed. In 1987, the University of Leicester set up the Leicestershire Learning Disabilities Register. This was a joint venture, funded by Leicestershire Health with support from Social Services.
A register is a record of information based on people—not events—that is updated in a defined and systematic way. The Leicestershire register is population-based. It covers Leicestershire and Rutland (once part of Leicestershire), a mixed urban and rural area in central England. This has a relatively stable population of about one million people, 11% of whom are South Asian.
The aim of the register is to promote the health, quality of life and social inclusion of people with severe learning disabilities and their family carers. It does this by providing a sampling frame for research and a wide range of high quality information to assist service delivery (Box 1). The register has supplied information to the UK and Irish governments, the Mental Health Foundation and many local departments and agencies. It also provides a safety net by periodically assessing the needs of individuals on its database.
Individuals are eligible for inclusion on the register if they are 19 and over; live within the county boundaries; and meet the criteria defining severe learning disabilities. These adults have a significant developmental intellectual impairment, problems with social functioning and need long-term support to live independently. The threshold for inclusion gives priority to those in greatest need. For them, the benefits of extra support are expected to outweigh any stigma of being categorised.
Adults on the register are followed up for life; and there are plans to extend the register to teenagers. There are currently about 3,000 adults on the register. This gives a prevalence rate of 3.9 per 1,000 population. It is estimated that 95% of all those eligible are included.
Inclusion requires a two-stage process of obtaining informed consent from service users and their main carers (Figure 1). The first stage—to allow professionals to share their names and contact details with the register so it can offer them an interview—is an opt-out process. A formal mechanism for this is now being set up. The second stage—to allow the register to collect, store and use their personal data—is an opt-in process. This has always been a formal written procedure, with service users’ express consent being obtained whenever possible.
Notification is a continual process. A network of around 130 professionals in primary and secondary care notifies the register about eligible service users. The professionals make one-off notifications of new patients or clients. Professional groups also work with the register to produce regular updated lists of their workloads. The register has developed its network by taking time to build working relationships based on trust and by issuing clear guidance about agreed procedures.
There is a rolling programme of structured home interviews with approximately a five-year cycle. The register has two whole time equivalent interviewers who have been specially trained. Home interviews provide the opportunity for a two-way exchange of information. Uptake is 95% for first interviews, 96% for second ones and 98% for third.
The interviewers collect in-depth information about service users. This includes their personal and demographic details; home circumstances; levels of skills and disabilities; physical and mental health; use of, satisfaction with and unmet need for a range of services; and benefits and income. Some of this information is used to confirm eligibility. Uniquely among learning disabilities registers, they also collect information about family carers’ health, needs and role in caring.
Family carers report a high level of satisfaction with these interviews. They appreciate the interviewers helping them review their situation and facilitating referrals when appropriate. They also value receiving information about financial benefits and local services such as respite care. At the first interview, for example, many of those eligible for mobility allowance are not claiming it. Raised awareness has led to some families subsequently receiving backdated payments of up to £2,000-
The register is registered under the Data Protection Act 1998. All the data are collected, stored and processed in accordance with this, the Human Rights Act 1998 and other current legislation and guidance. The register has ethical committee approval. It operates under the codes of practice of both the NHS and Social Services. There is a secure, password-controlled system. Access is restricted to approved people for approved purposes on a need-to-know basis. Anonymised data is used whenever possible. This provides a strict framework within which data may be shared.
Sharing information is vital for providing co-ordinated services. This applies both at an individual level (needing personally identifiable data) and to support the planning and evaluation of services (using anonymised data). Register data about the extent of disability, need and satisfaction with services has informed local joint investment plans and strategies. The register has identified variations by postcode area and ethnic group. It is used to forecast future needs.
The register provides a sampling frame for clinical and public health research. One study found that over half of those on the register who have epilepsy also have mental health symptoms. This is relevant to choosing a specialist to manage epilepsy. Another study showed that family carers have more illness than the general population, especially depression and musculo-skeletal problems. Depression was associated with challenging behaviour in the service user; and with unmet needs for financial help and GP support. This highlights points of potential intervention.
Service users and carers need accurate, accessible information about local services and support to be continually available. Accordingly, the register is seeking funding to develop a website. This will also be used, with different levels of access, for operational use, planning and research. Multidisciplinary groups guide the register’s development, ensuring continuing validity and reliability of its core data set. The future vision is to develop a virtual community, allowing exchange of information and interactive self-help on the web.
In Facing the Facts, the UK government cites the Leicestershire register as an example of good practice in understanding and responding to population needs. It is also ranked fifth among UK centres for learning disabilities research.1 Locally, it is seen as a valuable resource, providing a tool and a template for choice and