The Transition Blog

Following the Harvey and Me documentary team @WeLDNurses decided to talk about transition; a subject we have discussed previously, but really wanted to re-visit in the light of Harvey and Me.

We have had some experience of transition as parents and nurses and find the differences in areas and the availability and cost of services quite challenging to navigate. Currently it would appear that transition planning starts anywhere between 12-17years of age, and for some LD nursing teams they were handed people over once they were 18 with very little preparation. Should transition plans nationally standardised? Should every child with learning disabilities start transition planning at a certain age?

However as we always find, there were some examples of really good practice and proactive work with people who are transitioning to adult services.

For some community LD nurses are accessing special school reviews for children with LD and complex needs and joint working these cases alongside paediatricians and school providers. This enables some continuity of care and enables the learning disability team to take over from paediatric team once the person is over 18.

As with so many of our chats the locality of services is an issue for so many people with learning disabilities who may want local services to maintain family connections. But for many children and young people the specialist services they require do not exist locally. For some young people they are discharged from children’s services and no adult services exist in their area.

A fundamental consideration is for those children and young people who attend residential education, as this is often the precursor to long term residential care. Does this influence where people are placed? For example if a person from Rugby attends a residential school in Manchester, where will they end up residing? Would it be more appropriate for them to return closer to home, or rather to stay close to their peer group and in familiar areas?

How do parents find out about colleges? For some it is word of mouth and linking in with other parents who are in similar situations, this was illustrated in Harvey and Me – Katie Price met with parents who had already made the leap through transition to help her with her research into college provision. The chat ascertained that LDNs are not routinely involved in sourcing colleges or the decisions about which colleges would best meet the needs of the people in their care.

We were very lucky to be joined by some people with LD who had successfully transitioned to college and were being well supported in their new environment. Other contributors on the chat had experiences where college placements for people with more complex physical, health and/or behavioural needs were not so easy to access.

Transition plans can also present challenges, it was identified that the ‘Ready Steady Go’ plan had limited value for CYP who are unlikely to ever have capacity to manage their own health needs. This programme is the “Gold Standard” for transition for young people with long term health conditions in England, and links to Nice Guideline NG43 on Transition from Children’s to Adult’s for young people using Health or Social Services. Good practice was identified in the use of the Scottish Principles of good transitions(https://scottishtransitions.org.uk/7-principles-of-good-transitions/)  but experience of practioners didn’t always reflect the implementation of these principles.

Transitioning through health services is also an area of worry for many parents, one paediatrician becomes a number of specialist consultants and in some cases paediatricians are discharging patients at age 16 when adult services won’t pick them up until they are 18 – what happens during that 2 year gap?  During the chat we learned about hospice provision for children and young people with life limiting conditions. Hospice care in the adult arena is from age 18 upwards, this huge age span has implications for access as it is much wider than the 0-18yrs remit of children’s hospice care.

So what needs to happen, and where do we go? Some LDNs are going to local schools, school fairs andensuring they are aware of all the CYP coming through who will require adult services – should this be standard practice? Should transition nurses exist in every CLDT?

In reach work to introduce the CYP to adult services and support to develop relationships with them – who is best placed to deliver on this?

Would LD consultant role help bridge the gap between paediatrician and specialty consultants? Or could this role be provided by earlier allocation to a Community LD Nurse to support transition?

Do we need to further test and develop the ‘Ready Steady Go’ plan to ensure that young people with learning disabilities are able to plan for their transition to adult services?