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Working through the maze: Care of special children

Ensuring an integrated approach to the care of special children in Sutton, Surrey

Why was the initiative launched?
Where did they start?
Finding a systematic way of working
Is the new system working?
Keeping on track
Tips for success
For more information contact
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Why was the initiative launched?


Although his special needs were identified when he was three years old, a young boy with learning difficulties subsequently got lost in the maze of local systems. His mother was frustrated by the lack of progress over the following three years and her failure to get the support he needed. She was thwarted at every turn: he was not getting anywhere. She turned for help to her GP in Sutton.

It was a familiar problem to many GPs. Effective treatments were known and available, but local services simply could not to deliver. Something had to be done. Plans for an outreach paediatric clinic being taken forward by the local hospital seemed to offer an ideal opportunity to look for practical ways to improve the situation. The practice had been part of a total purchasing project and was starting work as a first wave PMS pilot. The greater flexibility these arrangements offered also seemed promising.

Where did they start?


The first step was to find out what had gone wrong. A comprehensive assessment had been undertaken when the boy was three years old. His needs were clear and known to those involved. But suitable care and treatment had simply not been delivered.

Problems arose as the child moved through the education service from pre-school to junior school. Each agency had different criteria for triggering the statementing process and each in turn was supported by different parts of the NHS. The results of clinical assessments for therapies were not passed on from one service to another so the child was continually waiting! Local services would not accept assessments undertaken by others. All the good work in his pre-school years had been lost.

Location was a big contributory factor. The practice bridged three health authorities, three local authorities and two regions. A walk of 100 yards from the railway station to the practice crossed the patch of eight public sector organisations and a multitude of voluntary organisations. All had waiting lists and different criteria for access to services. The solution had to cut through this maze of local systems.

Finding a systematic way of working


The practice set up a multi-disciplinary team to design a system that would ensure that childrens needs were met. The team consisted of Dr Paula Sneath, Consultant Community Paediatrician from Epsom and St Helier NHS Trust (who was planning the outreach clinic), Sue Lynch, a Health Visitor attached to the practice and working for Croydon Community Trust, and Dr Anne Hollings, a GP.

East Surrey Health Authority gave the team a small budget to fund blocking problems faced by children with special needs. The health visitor put together a detailed picture of services available with their criteria and the working practices involved, and started to develop links with liaison staff in education services and schools. The team chose to focus at operational level, directly with other clinical staff, rather than look for strategic, policy solutions.

The team decided that the key to success would be a systematic way of working. The new clinic would provide the base for it. The starting point would be a thorough consultant-led assessment that would enable the team to agree a suitable management plan for individual children. The GP would take responsibility for medical follow-up and the health visitor would liaise with the family and local organisations to make sure that those involved in delivering elements of the plan knew what was required. Regular monitoring of progress coupled with prompt action when treatment drifted away from the plan would be essential.

Is the new system working?


Work started in earnest on the new approach in 1996 and the system continues to develop. Following a gradual build-up during 1997 the team is now managing care for about 15 children with special needs. A diary of patients, maintained by the health visitor, supports the monitoring process. The Consultant's secretary has proved to be a valuable co-opted member of the team. She is an important channel for communications for the practice. The health visitor takes the initiative to keep in touch with the children and provides updates for other the team members. Children don't need always to be attending clinics, and about a quarter of the children are managed in this way.

Keeping on track


If a care plan is interrupted or treatment diverges a range of actions has been developed. These include suitable letters from the paediatrician or GP, contacts by the health visitor with liaison staff in other agencies and occasionally an offer to meet any additional costs (such as the cost of a contribution to an assessment). In the event the offer of funds rather than payment has often been sufficient to open the door. For example a hold-up for one child arose because of problems in securing a therapy contribution to the assessment . An offer to cover the modest cost of the therapy contribution, some £43, was sufficient to get the case moving again!

By creating a strong team and working on the needs of the child the team has created a system to deliver care during the school years for the children with special needs. No longer do GPs find the child with special needs a heart sink consultation because they know there is a way that they can help. The trust built up in the team has had an important impact on local services: GPs can now refer direct rather than through the Consultant. It has speeded up the process and eliminated irritating delays.

For the boy whose situation that prompted the work the first step was to catch up with the treatment that he had missed. The working group commissioned a period of intensive treatment from a local speech therapist over the school summer holiday. He is now doing well (see Box).


A child with special needs:


Before:

He stood silent with his back against the wall. He looked like a normal 7 year-old boy except for the constant nervous twitching movements of his face and arms. He was struggling at school and receiving none of the support he needed.

After:

He has lost all his twitching, enjoys school and has kept up academically with his age group. He believes in himself again.


Tips for success


For more information contact


Dr Anne Hollings, The Surgery
Shadbolt Park House, Salisbury Road
Worcester Park KT4 7BX

Telephone 020 8330 4096 Fax 020 8330 1928
Email Hollingsp@cs.com

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