Charities Commission Registration CC22512

POSITION STATEMENT

Meeting the Care and Support Needs of Young People with Complex and Chronic Health and Disability Needs as they Approach Adulthood

We believe:

1. Special provisions need to be made for young people with complex and chronic health and disability needs, particularly with regard to their health care after the age of 12 years.
2. Young people with complex and chronic health and disability needs require a single local individual who has a role as a point of first contact and co-ordinator of a team of care. 
3. Young people with complex and chronic health and disability needs require access to the best available national or international expert medical advice to direct their health care.
4. Young people with complex and chronic health and disability needs require access to habilitation and rehabilitation services appropriate to their age and developmental level.

We note:

1. That many young people with complex and chronic health and disability needs often have problems that require input from a range of health providers and services.
2. That many young people with complex and chronic health and disability needs have difficulty accessing coordinated care and expertise in rare disorders.
3. Apart from within General Practice the philosophy of inclusive holistic care is often not present within adult specialist medical services.
4. Many young people with complex and chronic health and disability needs have problems that are too complex or rare to be adequately managed by a General Practitioner alone. 
5. When transferred from paediatric care the process of access to specialist services by General Practitioner referral is procedurally complex and  time consuming.
6. Significant financial barriers frequently prevent young people with complex and chronic health and disability needs from adequately accessing General Practice and this often means transferring costs to individuals and families.

We recommend:

1. Development of systems for funding and implementation for a system of care that meets the needs of these children and young people.
2. That as systems of capitation or population based funding are developed, care is taken to avoid any incentives that might discourage care for individuals with complex and chronic health and disability needs. Special recognition of the high cost of providing care for these people, such as funding attached to the individual, may be required.
3. Funding of care for young people with high health and disability needs should support the best local solutions for continuity of holistic care. These might include:
   - Development of adolescent transition services
   - Initiatives within primary care
   - Funding for Paediatric Services to extend to young people up until their 18th birthday. (consistent with PSSR and UNCROC)
   - Development of adult medicine and adult rehabilitation services with a special interest in young people with high health and disability needs.
4. National networks need to be developed to support the complex needs of young people with high health and disability related conditions which are frequently rare.

We further recommend to support groups:

1. They encourage the establishment of developmentally appropriate systems to support the continuity of holistic care after age of 12 eg:
   develop adolescent services that focus on the transition to adult services.
2. Support networking both nationally and internationally to deliver the best available services for young people with high health and disability support needs.
3. Young people with complex and chronic health and disability needs require a transition plan clearly providing for continuity of care when they have reached the age at which they would otherwise leave Paediatric care: the plan should clearly identify which option is chosen for ongoing holistic care.
4. Discharge from paediatrics should not occur until the plan is agreed and operational.