Co-ordinating care for disabled children

Mother of a disabled child, Dr Ella Baines gives her professional and personal view of how GPs can co-ordinate care for disabled children.

Barriers need to be broken down for disabled children attempting to access primary care
Barriers need to be broken down for disabled children attempting to access primary care

Taking my five-year-old son with severe learning disabilities to see the GP can be difficult. Even sitting in the waiting room can be a challenge. I always hope the doctor will take into account his disabilities but not be overwhelmed by them, but that's difficult if my son is distressed or if we see someone new.

When asked by the charity Contact a Family about how GP care could be improved, 66% of parents wanted their GP to have a better understanding of their child's condition and 62% wanted to see improved joint working of GPs with other professionals.

A new guide published by the UK charity, which supports families with disabled children regardless of their disability or condition, aims to help GPs increase their understanding of the specialist services that disabled children access and make it easier to co-ordinate care.

Supporting the family

As a GP myself, I work with many families with disabled children. For me, getting to know a disabled child when they are well is the key to assessing them properly when they are ill. By understanding the whole family, I can begin to appreciate their daily challenges and better support the carer; which is critical in ensuring the child's wellbeing and family stability despite often great pressures. Building this relationship aids continuity and joint decision-making. Taking time to identify other professionals involved can help to prevent fragmentation of care.

'Battle for services'

The guide from Contact a Family, GP practice guide: supporting disabled children and young people, has several clear aims:

  • To describe the roles of specialist healthcare professionals and their services for disabled children - essential information for CCGs.
  • To highlight the importance of early identification and intervention for developmental delay.
  • To discuss some of the issues disabled children frequently present with.
  • To assist GPs in co-ordinating care for disabled children and young people.
  • To provide resources for GPs to signpost carers for support and information.

Families with a disabled child often describe a 'constant battle for services' and feeling unable to cope. Carers have told Contact a Family that getting early positive advice and information from their GP can transform their experiences by allowing them to access support from the outset. Early identification of problems with appropriate referral will help disabled children access the health services they need and forge links between different professionals involved in their care.

Reasonable adjustments

According to Contact a Family, more than three quarters of carers of disabled children do not visit their GP about their child's condition, with many finding it easier to go straight to A&E.

Another guide produced by the charity, Helping make GP surgeries more welcoming for disabled children, explores the potential consequences if children are seen in A&E rather than by their GP and explains why families of disabled children can find it difficult to visit their GP surgery.

It also offers practical suggestions and reasonable adjustments GP practices can make so it is easier for disabled children to visit.

Such guides are an invaluable resource for GPs, in order for them to break down some of the barriers for disabled children trying to access primary care. It is important that we ensure families with disabled children see their GP as the first port of call rather than the last resort when their child is unwell.

Simple adjustments to appointments and seating areas, for example, can drastically improve a family's experience of seeing the GP and do not cost anything. GPs can give families with disabled children consistent support and understanding, providing a trusted and long-lasting working relationship.

  • Dr Baines is a GP in Brixton, London

Resources

  • GP practice guide: supporting disabled children and young people
  • Helping make GP Surgeries More Welcoming For Disabled Children
  • www.cafamily.org.uk also has reliable medical information on more than 400 disorders, including rare conditions

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