8. AGE APPROPRIATE CARE
8.1 Survey feedback
Specific Question Wording:Q17 "Are there any aspects of age appropriate care provision not sufficiently covered within either the text or recommendations?"
Thirty-nine responses (34%) did not make any comment relating to the recommendations for age appropriate care. The percentages in the section reflect the percentages of the actual responses made to this question (n = 76). All of the answers are multi-coded so individuals were able to make multiple comments so these percentages reflect the number of times a comment was related to the particular subject.
Thirty-seven of the responses (49%) stated that they were in agreement with the recommendations on age appropriate care. In addition to a statement of broad agreement, there was specific agreement with the idea that a working group should examine the facilities and instances where adult services may not meet the needs of young people. Responses also agreed that training was necessary for members of staff dealing with young people, especially those who have complex needs.
Twenty-seven responses (36%) suggested areas for specific attention. Most of these were covered in the Draft Plan. Specific areas highlighted in the responses are:-
- Planned transition from paediatric to adult services
- The inadequacy of adult services for young people
- Those with learning disability will require additional support through transition
- New hospitals should have an adolescent ward
- Care should be holistic
- Nine responses (12%) highlighted the importance of integrating care with the services of education and social work provided by local authorities and five responses mentioned the need for a multi-agency approach.
- Rural and remote areas have specific challenges
- Information and support should be provided to the young people's carers when they are in hospital and during transition
- Seven responses (9%) mentioned support for families.
Funding issues were raised in fifteen responses (20%). This included financial support for families, but it mainly related to the funding required for additional staff and facilities. One response (1%) suggested that it may actually be more practical to consider temporary solutions for transforming space to meet the needs of adolescents, given the overall need for space and the lack of regular demand for some services.
Overall, there was a level of agreement with the proposed recommendations and there were certainly agreements about the nature of the challenge being faced. As with many other elements of the plan the reservations appear to be centred on funding, facilities and integration with other service providers.
8.2 Event feedback
Overall participants thought that the Plan contained good recommendations in relation to age appropriate care, which adequately covered the key issues. The key challenge noted was whether implementing all the recommendations would be feasible, particularly given some of the tight timescales and the resources required for delivering them.
Adolescent care
There was strong agreement with the principle of the recommendation that " NHS Boards should identify opportunities to provide dedicated hospital facilities to suit their local volume and pattern of adolescent use, or alternatively develop other means of meeting the needs of this group." There was a recognition that teenagers "need their own space" and the ability to maintain as much normality as possible when in hospital. Facilities to enable young people to communicate with the outside world (phone, internet, email) were considered particularly important for young people, and something which is currently missing from hospitals.
It was noted that the challenge will be in successfully implementing this recommendation given resourcing and training requirements. Several people commented that some facilities are not even yet 'child' friendly. It was suggested that it would be useful to have an indication of how these facilities might be resourced. The small numbers of adolescents in more geographically remote areas was considered another challenge which might hinder the equitable application of this recommendation.
"[In] Remote and rural areas it can be difficult to prioritise age appropriate adolescent care as it may be resource intensive for a small number of patients."
Many participants also recognised the importance of facilities for young people in outpatient as well as inpatient facilities.
Staff training
This recommendation to provide generic training in the care of young people to all staff dealing with adolescents was broadly welcomed, but there was a degree of scepticism on the extent to which it will be achievable. The major concern raised was that the timescales appeared to be short, and people expressed doubt that training packages could be created and have all staff trained by 2012.
As with the recommendations in relation to workforce, many people recognised the challenge of enabling staff to participate in training, due to limited resources and the inability to backfill specialist posts.
Throughout discussions, there was considerable discussion as to what training should consist of - many people felt that what was required was to raise awareness of issues young people face in the hospital environment, others considered engagement skills to be important, particularly around the extent to which people want to be involved in decisions about their care. It was considered important that the content for 'generic' training is carefully defined to ensure it covers the key issues in relation to working with young people.
Many people suggested that this should be an inter-disciplinary training and that " training needs to include staff for whom treating children is only part of their remit".
Clinical leads for adolescent services
There was a broad consensus that identifying clinical leads for adolescent services at hospital and regional levels was a positive recommendation. It was agreed that a voice to champion the rights of young people would be useful in a hospital. However, it was suggested that the lead person need not necessarily be from a clinical background. Many participants suggested that underpinning this role should be to strive towards a culture change and embedding good practice and standards in working with young people across services. Some suggested that if clinical leads were established, they should have adequate resources attached to enable effective change to be delivered. There was a general concern as to whether this would be new capacity or taken from existing resources.
Long-term conditions experienced by young people
There was general agreement with the recommendation that "a working group should be established to scope the extent to which the current range of adult services does not fully address the pattern of long-term conditions experienced by young people". Many people acknowledged the gaps in provision for those with long term conditions. There was a request that community based work be included as part of this scoping exercise.
Transition
It was felt that the recommendation to ensure services plan a well structured transition to adult services was very important, as experiences of transitions are currently poor across all services, leaving some patients and families feeling abandoned rather than supported. However, there was a degree of scepticism about this recommendation, as it has long been recognised as an issue, but there has been no change. It was felt that there was a need for clarity on how this recommendation will lead to action.
The importance of connecting child and adult services at the transition was reinforced as well as adult services being resourced properly to deal with young people. Some suggested that the issue of effective transitions needs to be built into the commissioning process, as adult services will not automatically take on young people and therefore consideration needs to be made as to how they can be adequately resourced and commissioned to participate in the transition process.
There was considerable discussion around issues of the age of transition to adult services. Many felt that decisions about transitions should not be purely based on age, and instead be more developmentally based. Some suggested that this concept should be given greater emphasis in the NDP. Some also felt that the transition point should take account the views of the young person themselves and that help is given to enable them to decide when they feel ready to move on to another type of service.
Other relevant issues raised by participants included:
- Many people noted the importance of key workers / lead professionals to manage the transition, particularly for young people with complex needs. There was a suggestion that 'transitional nursing' could become a speciality.
- Continuing education while in hospital was raised as an issue by several participants and considered to be a particular problem. There were many experiences recounted of there being no link between the home, school and hospital. Meeting educational needs was seen as a key issue that needs addressed "as there is no obligation for NHS Boards to provide education in hospitals".
- The issue of child protection was raised by many participants as being an important omission from the report, both in relation to forensics and child protection procedures in adult hospitals.
- Many participants highlighted the confusion caused by different age ranges of different services for children and young people. For example, some services classify young people up to 25, while some are 16 and others are 18.