Encompassing the need for health support in universal settings and continuing care

Written by Ben Palmer, Contact a Family

While many of the duties to provide short breaks sit with local authorities, health authorities have prescribed legal responsibilities to support children with special educational needs and disabilities (SEND) and their families.

The SEND Regulations 2014 requires those responsible for health services, to make provision of: 'services for relevant early years providers, schools and post-16 institutions to assist them in supporting children and young people with medical conditions'; and to make: 'arrangements for making those services which are available to all children and young people in the area accessible to children and young people with special educational needs or a disability.'

Clinical Commissioning Groups' also have a legal responsibility for securing, to a reasonable extent the health care that a person needs, where such needs are so complex that they 'cannot be met by universal or specialist health services'. The framework for children and young peoples Continuing Care, along with recent legislation, has created a new integrated approach to the provision of services for children with SEND. However, there have been many difficulties for families where their child's needs encompass health and social care.

This case study shows how West Sussex County Council have addressed some of these issues in their area by successfully working with the West Sussex Parent Carer Forum throughout the decision making process.

The situation that presented itself was the planned closure of two residential short break homes. A review of services was undertaken, which included feedback from the parent carer forum. Whilst feedback at a strategic level was sought, health providers did not speak directly to parents using the service.

In November 2011, the council worked along with the parent carer forum to co-produce their Short Breaks Services Statement. While this was not directly linked to the issue at hand, it proved to be instrumental in creating a positive working relationship.

When it came to the closures of the short break homes, the council worked alongside the forum to gather the views of those families who used the services. When health providers held an official consultation, the forum supported those directly affected to get involved, while the forum offered a strategic view of the wider impacts of the closures.

Following on from this, the forum worked closely with families, listening to their views, and providing support so that these views were paramount to this process. As a consequence, a number of strategies were developed to make the transition following the agreed closures as smooth as possible, including:

  • Provision of a space available throughout the year at an alternative residential short break home.
  • The arrangement for specialist transport to the residential short break home.
  • Increased training and support for foster carers.
  • Improvements to other residential short break homes to allow them to support children with complex health needs.

The result is that the majority of families have made a good transition to the new arrangements. This shows the clear benefit of participation, and highlights the values of coproduction with the parent carer forum in the review and development of services.

This also shows that in order to successfully review services, it is necessary to engage with both the parent carer forum, and all other children and families directly, or indirectly affected.

The parent carer forum has also been involved in the improvement of GP services within the local area. As a result of this, one surgery has been awarded a Pathway to Pacesetter award for its improved services.

The practice in question had 114 patients under 16 on their register who have complex needs. Many of these found the experience of accessing services through the practice to be stressful and overly complicated. Parents frequently had to recount their child's complex health needs with each practitioner they met. A working party was created with parents from the forum to consider these issues.

This co-production approach has resulted in a broad number of changes within the GP practice, which has affected the culture, ways of working and patient experience. These changes have made a truly significant difference to the lives of children and families, and include:

  • The introduction of a 'Medical Passport' providing essential information to help clinicians and other staff to understand, and support appropriately each child with complex needs and their family. This includes their preferred method of communication, behaviours they may display and important medical information. 
  • Introduction of a 'flagging' system for parents of children with complex needs so when they telephone the surgery, the system displays the best practice for that particular patient. This means families do not have to provide lengthy explanations each time they call, and the reception staff are better equipped to carry out their roles.
  • Improvements to facilities including 'Where's Wally?' posters, toys and books and a quiet area for children who find the environment overwhelming.
  • Photo boards with staff member's roles have been added to the practice to help children and families easily identify those supporting them.
  • A Facebook page has been created to allow parents of children with SEND to share their experiences and provide to feedback to the practice so communication is an ongoing and effective process.

West Sussex parent carer forum have successfully been able to support improvements in both short breaks and other important services. However, the availability of short break for children with complex needs and their families is patchy, and not universally accessible. Much can be learned from the coproduction approach the forum in West Sussex have taken, the excellent outcomes achieved and the principles that can be applied where services for children with SEND are developed.


"The surgery is now more flexible, they've changed their perception of parent carers and conversations are easier. [They] genuinely wanted to help us."

Zoe, parent of an autistic child:

"Since the medical passport we generally see the same nurse or doctor. This is so much calmer. My son needs to spin 3 times on the chair before the appointment can start and now everyone knows and accommodates this. They really care - the care they give makes a huge difference to us as a family."

Debbie Elcome, practice coordinator:

"The medical passports are a great innovation because staff can now prepare themselves before a consultation. There is definitely a better understanding between professionals and families..."

Key principles

  • The importance of widespread commitmentfrom all parties to engage with parents, accompanied by the recognition that to be effective, this will require supportand investment.
  • Acting upon and responding to issues raised by parents. Where parents feel their views are taken seriously they can see that they can genuinely contribute to decision-making processes.
  • Expectationto respond to parents' needs. A commitment to participation needs to be understood and reflected in the approach of all involved, reflecting the changing attitude from a 'can't do' to a 'together we can do' approach.

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