The transition into adult services is an inevitable process that everyone must go through. At Claire House we aim to support all our young adults and their families through this process by offering the right guidance, support and advocacy. We aim to empower the young person at the centre to have a real sense of control and choice over their lives, this aim will be supported by a multidisciplinary team of professionals at Claire House together with wider professional input from the appropriate teams across healthcare, social care, education and the voluntary sector.

The transition from paediatric to adult services can be a traumatising and overwhelming experience for young people and their families (Care Quality Commission, CQC, 2014). The universal services that are provided for children are often built around the needs of the child and their families. Strong and consistent relationships are built between key professionals and there is often oversight and accountability from the lead professional, often a paediatric consultant. This multidisciplinary approach is more important for those with multiple or complex health needs due to the level and breadth of input needed, this requires clear lines of communication, mutually agreed outcomes and effective team work across different services and agencies, plus, ensuring collaborative working to meet the ongoing needs of the young person.

Transition is not something that should be done to the young person, it should be led by them or their family if they are unable to be fully involved. Ideally your transition should be based on aspirations and future wishes, it should not just focus on the individuals’ medical diagnosis or condition, we all need our own lives and our own experiences so making sure there is a day centre or sufficient care package on offer to support social needs is key.

There is no right or wrong way to do transitions, just start by having a good think about the future and what you might want for yourself or for your son or daughter.

The amount of options available to young adults and their parents can be overwhelming, a lot will rest on which options are available in your area or due to the diagnosis or condition, some young adults with the most complex health needs qualify for Continuing Healthcare (CHC) funding this is applied for via a social worker and is then assessed by an independent nurse, if you are accepted then you can either take control of your own personal health budget (PHB) or you can employ a third party (agency) to take care of it, however none of this is straight forward and can require many hours of research, admin and form filling.

For some others you may not qualify for such funding so you will be offered services from social care instead of the NHS, this offer should still put the young adult at the centre and some negotiating maybe required to get the right services in place, what they offer may not be what is required so again a bit of research might help when trying to find an appropriate day centre or service.

I would love to say that we are complete experts in all things transition but I’m afraid no one is as it’s just too big for anyone to have a complete picture especially when every local authority and area offer different things with different assessments and criteria, we will however always try our best to help you find out and help you get to where you want to be.

Another key difference in the adult world is how parents /carer’s can be viewed or dealt with. As we all know, as a parent you have parental responsibility for your children until they turn 18. This allows you as a parent to have the right to be consulted about all decisions regarding your child, however there are some exceptions to this rule, such as if the young adult is assessed as fully competent to make their own decisions. Once your child has turned 18 and becomes a legal adult, the rules change and the how the role of the parent is viewed, can vary between different professional’s depending on their own understanding of the mental capacity act (2005). There is lots of evidence out there to prove that most medical professionals in the adult world need to have a better understanding of the Mental Capacity Act. At Claire House we cannot control this, but we can support our families by giving them the awareness and support needed to understand these complex changes, and how they affect you as a parent and your involvement in your son or daughters transition and specific medical decisions.

Support from our team

The Claire House young adult team would like to offer support and advice to our young people from the age of 14 onwards, and offer bespoke transition planning on a one to one basis, and also within groups at events for parents or young people. This could be through advice from other parents, or young people with the lived experiences of going through transition, or by signposting to other relevant services.

The transitions team will aim to support the young person and their family by agreeing some outcomes at the start of the process, this will enable all participants to have a clear idea of what is required and expected from this individual and their family.

The service offer will always be bespoke but will share some common practices for each young person and their family. We have to be realistic about our role, as we are not a statutory service and do not necessarily have influence over funding, budgets or assessments. These are for social care and the NHS to prioritise, but we will support you to navigate these process’ and liaise with other professional’s where needed.

Please see downloadable PDF transition fact sheet

The service has grown immensely over the last four years, and we want to make the most meaningful differences to your experiences of transition. One area that has a lot of potential, and has added real value to the experiences of some of our young adults and parents, is peer support. Speaking with others who can truly relate to your own story and your own worries and fears, can really help you to feel less isolated, more in control and hopefully give you the confidence and strength to keep pushing for the best outcomes for yourself or your son or daughter.

– amazing resource for anyone going through transition

– national standards for what care and support you should expect to receive

– great factual resource to support parents with the realities of their child becoming an adult

– information regarding wishes and choices within adult palliative care

Alder Hey children’s hospital transition website, very useful!

Palliative Care Transition

Claire House is primarily a children’s palliative care service and as part of the transition service, we offer an introduction to adult palliative services.