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The Stockport Disability Database

Elaine Mounter
Database Coordinator
Stockport Disability Database
NHS Health Challenge Awards March 2002
T:0161 419 9937

Government guidelines recommend multi-agency working, and the White Paper Valuing People recommends listening to and involving customers in planning future services.(1) The Stockport Disability Database is based on focusing on the customer (children with disabilities and families), which is one reason why it is such a hit with those families.

How the database was set up
The story starts with the Children Act of 1989, which states: "All authorities shall hold and maintain a register of children with disabilities in their area up to the age of 19."
Many authorities did start up registers quickly, but in Stockport we took some time to consult with parents, carers, young people, professionals from all agencies and the voluntary sector. We needed to know how the database could be used and how it could help families. 
We visited support groups and recruited a consultation group from those parents who wished to help; they were paid for their expenses, and they made a huge impact on how our database was developed. We also visited youth groups to discuss the database with young people themselves. 
The parents and carers set the criteria for entry onto the database and requested that the computer system was standalone to make sure confidentiality is always upheld. This arrangement has enabled the database to provide speedy data at a moment's notice.
The database was joint funded for the first three years, and although I am now employed by the Primary Care Trust and based at the local hospital, my post is the subject of an SLA (service level agreement) between the PCT and SSD. We have maintained the monitoring and support for the database by having a multi-agency steering group made up of senior managers from health, social services and education, and a parent representative.

What kind of data do I collect?
The data collection form is 16 pages long. This may seem offputting to some people, but parents did help me design this form, and these are the questions they wanted to be asked. They wanted to be able to say what their child/young person could do with help, rather than what they couldn't do. 
Health visitors, school nurses and I all support families when completing the form. The questions cover health, social services, education, leisure activities, housing and adaptations, aids and equipment, and services obtained through voluntary agencies. All questions have three possible answers - either they receive the service, need it now and do not receive it, or it will be needed in two years time. 
The first column is an obvious monitoring tool. Are these the services people want? The uptake of a service is a quick way of knowing that you are indeed providing what is wanted and is needed. The second column shows the unmet need and can be used to gain funding or resources, and to assess staffing levels. 
The third column is for forecasting, which is a must. Forecasting can prevent the fire-fighting effect, which is costly and time-consuming. When forecasting is used in business it can provide good data to plan for the customer's needs in advance, making sure that the right product  is made available at the right time. Across all the statutory and voluntary agencies this forecasting is available immediately and free of charge.

What are the data used for?
The reports I create have been used by all agencies. The education department has used the database to recruit parents to take part in a focus group to look at the planning of future services in education. Educational psychologists produce regular reports as part of their strategy to reduce the waiting lists for their service. 
The housing department at Stockport Metropolitan Borough Council wanted to know how many people lived in council property with adaptations and how many needed a property with adaptations. I was also able to predict for them the future needs. This request was made when it was realised that adapted properties that became vacant were having the adaptations removed by the housing department , only to find families asking for that sort of living accommodation shortly afterwards. Using the database should hopefully avoid this in the future and therefore save the department time and money. 
The transitional coordinator at a local special school wanted to know how many young people would be coming her way with severe learning difficulties over the next five years. This report will enable her to plan for the new sixth form college being developed at the school. 
Social Services and two voluntary agencies used the database to look at how a small pot of money could cover the most unmet need. The data showed that a "sitting service" was needed more than respite care or any other service that would help give support to parents. The result was that 200 families received a sitting service almost overnight. If negotiations had taken place to see where the money should be spent they probably would have carried on much longer. 
Funding can be lost if a quick response is not attained, and the database is the quickest way to get the data. Whether it is for allocating new monies or to spend current funding before timescales run out, the database can help with statistics to aid these decisions. 
A group of paediatricians were examining autism and challenging behaviour, and a report was produced to look at these children by age, services received and medication taken. 
Along with the epilepsy nurse, the nasogastric feeding nurse and the hospital and home teaching service, many professionals from the health service have used the database for research and planning. A voluntary agency used the unmet needs data to help them in their bid for lottery funding to provide activity-based short breaks. 
In order to organise future training schemes for childminders, data were supplied regarding parents who need a childminder and the diagnosis of the child, split by area, age range and attention required.

The Threeway Freeway of Information
I call the database the "Threeway Freeway of Information" because I collate the information from all agencies and distribute it to families, who in turn have an opportunity to provide input into how services are planned. There is also a brilliant grapevine of information I gather from the families, which I distribute using the database newsletter. This means that there is an equality of information between the families so that everyone knows what is happening.
For more information please contact me.

1. Department of Health. Valuing People: A New Strategy for Learning Disability for the 21st Century. London: HMSO; 2001.