Consultation begins on future of short breaks services

Wednesday 3rd July, 2013

The NHS in West Sussex is launching a consultation on the future of short break services (previously known as respite care) for children and young people with complex health needs and disabilities.

In particular, the consultation focuses on the future of services at the Cherries in Chichester and Holly Lodge in Horsham.

The current arrangements for NHS-funded short break services for children and young people at these units are unsustainable and the consultation sets out two possible options for the future of local services.

The consultation is being run by the three clinical commissioning groups (CCGs) that commission (organise and fund) short break services in West Sussex: NHS Coastal West Sussex CCG, NHS Crawley CCG and NHS Horsham and Mid Sussex CCG. 

The two proposals out for consultation are:

  • Close Holly Lodge and the Cherries and provide continuing care in line with national best practice, through the greater use of specialist nursing support across a wider range of settings including council-run social care units.
  • Identify alternative providers or partners who can offer new and innovative ways of using and staffing Holly Lodge and the Cherries so that services can be maintained.

Whatever decision is reached, overnight short breaks will continue to be available to all children and families who need them, but may be provided at a different unit.

The three CCGs, and the current provider of services Sussex Community NHS Trust, have agreed that the way short breaks services are currently provided at the Cherries and Holly Lodge cannot be sustained into the future.

Following a review of the evidence, the West Sussex Health and Adult Social Care Select Committee (HASC) also agreed with this view.

The main reasons why change is needed are:

  • To better meet the changing needs of children and their families. Families are more frequently choosing to have short break care in settings other than residential units. As more children with complex health needs live longer, a wider choice of age-appropriate services is needed.
  • Changes in national policy and best practice. The services currently provided are not in line with national guidance on how best to care for children with complex health needs. National guidance recommends that more care is available from a wider range of settings near to or at the child’s home. 
  • Demand for services has reduced. National changes mean that fewer children now qualify for the NHS funded services provided at the units.  In addition, as parents are given greater choice about where to receive care, fewer are opting to use the residential services.
  • Staff shortages and safety. There are problems in recruiting and retaining appropriately trained staff to work in the residential short break units meaning that essential standards of care and safety cannot be guaranteed into the future.
  • Financial challenges. Because fewer families are using residential short break units, there is not enough income to continue to meet the costs of running the Units.

Speaking about the consultation, Dr Tim Fooks, lead for children’s services for NHS Coastal West Sussex CCG said:

“Children with complex health needs and disabilities and their families greatly value the availability of overnight residential breaks and this is an important way of managing their needs. Most of us can only imagine the pressures they face.

We guarantee that overnight breaks will always be available to all children in West Sussex who qualify for them. However, it has become clear over recent years that we cannot maintain all of our overnight breaks units in their current form. 

As we set out within this consultation, there are compelling reasons why change is necessary at the Cherries and Holly Lodge units.

We want to work with local families and communities to make sure we continue to provide the best possible care for children with complex health needs and disabilities both now and in the future.”

Dr Minesh Patel from NHS Horsham and Mid Sussex CCG said: “We are interested in hearing from everyone who has an interest in overnight break services for children with complex health needs and disabilities in West Sussex.

We want to hear from families and carers of children who use these services so that we can provide availability of a high quality service for them going forward that will meet their needs and give them the support and care they need.

We know how important this type of care is to those who use it and we are committed to carefully considering all of the responses we receive during the consultation.

We have set up a range of ways people can get in touch with us and have their say, and we will work hard to make sure everyone who wants to contribute can.”

Have your say

There is a range of ways people can submit a response to the consultation, request a one to one or group meeting, find out more or raise a query or complaint about the consultation:

  • By post - Short Breaks Consultation, FREEPOST, The Causeway, Goring by Sea, Worthing, West Sussex, BN12 6BT
  • By email -
  • By phone - 01903 707469

The consultation runs from 1 July and closes on 4 October 2013.

Further information

  • ‘Short breaks’ is a general term that is being used to describe support services for children with life-limiting conditions or disabilities, including those with complex health needs.  Although they do not need to be in hospital, children and young people  may need extra care and support at home, for example if they need to be on a ventilator, have a neurological condition, have suffered a brain injury or have severe behavioural difficulties. Children with the most complex needs are eligible for NHS funded continuing care.
  • Council-run social care services have a formal responsibility to provide breaks for carers and to meet the social needs of children. The NHS’s responsibility is different.  Although NHS-funded continuing care provides breaks for carers, its real purpose is to deal with the child’s on-going health needs which, if not met, would lead to medical problems. NHS and social care work together to try to ensure these complementary services are provided in a co-ordinated way for families.
  • Short breaks services can include day, evening, overnight and weekend activities and can take place in the child’s family home, the home of an approved carer or in a residential or community unit. 
  • The options are being put forward for consultation have been developed by the commissioners as a result of the discussion and engagement to date with patients, families, service providers, the county council and the HASC.
  • A third ‘do nothing’ option has been considered but has not been put forward for consultation because the CCGs, SCT and HASC have all concluded that the way services are currently provided needs to change.