TRANSITION AND BEYOND- THE DOUGLAS HOUSE PERSPECTIVE Dr Laura Middleton GPwSI Speciality doctor Helen and Douglas House

BACKGROUND Having shared the journey to early adulthood with around 25 young people Helen House launched a successful appeal and built Douglas house in 2004 We are a hospice for young adults to the age of 35yrs.

We have started to realise THE FULL EXTENT OF CARING FOR COGNITIVELY AWARE YOUNG ADULTS who are STRIVING FOR autonomy from parents dealing with sexuality issues and starting to come to terms with their own mortality

TRANSITION DEFINITION “The purposeful planned process that addresses the medical, psychosocial and educational/vocational needs of young people/adults with chronic physical and medical conditions as they move from child-centred to adult-orientated healthcare systems” DoH Not an easy process. “Going from children’s services to adult services was the biggest pain in my arse” Jack Dawson ‘13

THROUGHOUT THE PROCESS IT IS IMPORTANT TO HAVE Excellent communication between teams Professionals should maintain unambiguous communication which is supported by a plan of care to ensure continuity of care. This helps to ensure all care is well coordinated Transition planning and care reviews are important. Support for yourself Working with children and young people who have life- limiting conditions or who may be dying can be challenging and emotionally draining. It is essential that staff use the support provided within their organisation including line manager support and clinical supervision.

THE TRANSITION PROCESS AT DH. MOVING FROM CHILD FOCUSED ARE TO YOUNG ADULT BASED CARE. Adele our lead transition nurse makes contact with the family’s undergoing transition when the patient is around 14 and acts as a liaison for support through the process.

AT THIS POINT THE FOLLOWING POINTS ARE OFTEN AT THE FOREFRONT OF DISCUSSION: Future college/university plans or plans for independent living Benefit advice Concerns about breakdown of secondary care through transition concerns re losing a consultant’s consistent input who often has been with the patient since early diagnosis. It’s a difficult time as transition period occurs at a time when many of the teenagers are going through the difficult problems of adolescence.

ADOLESCENT DEVELOPMENTAL STAGE S MAY INCLUDE Pushing boundaries and ignoring rules and regulations Inconsistent thought processes Responding to peer group pressure Risk taking or experimentation.

To develop an individual supportive care package i t i s i m p o r t a n t t o u n d e r s t a n d e a c h y o u n g p e r s o n a s a n i n d i v i d u a l taking into account their interests, experiences, relationships, future aspirations and coping strategies. Sometimes some ground rules may need to be established regarding unacceptable behaviour understand each young person as an individual

IMPORTANT POINTS FOR EFFECTIVE TRANSITION 1.Early preparation 2.Young person involvement if possible 3. Timely discussions. It is important to avoid specific times of stress for the family. 4. Honesty with no promises. It is easier to add something rather than to withdraw something which may have been suggested

5. BROAD PROFESSIONAL INVOLVEMENT A young person’s GP is often one of the only consistent professionals across the period of transition. It is essential to engage professional colleagues from social services, education and health. The family should be central to any meetings held.

THROUGH TRANSITION AND BEYOND DECISION MAKING SEXUALITY 1.Decision making Douglas house has experience of looking after patients with a wide range of conditions Some young people will require decisions to be made on their behalf Housing/education/care Advanced decisions for emergency care. Others will have the capacity to make their own choices.

THE MCA IS HELPFUL TO Support and enable people>16 who are competent to make decisions about their own welfare, financial situations treatment and care It also provides a statutory framework to protect people who may lack capacity. This is usually made as a “best interests decision”.

“BEST INTERESTS DECISION”. This how we base the discussions around ACP for patients without capacity. It involves taking the opinions of the patients, carers and medical professionals to make a best interest decision for decisions regarding CPR and ceilings of hospital care.

2.SEX AND RELATIONSHIPS. While focusing on disease control and management it can be easy to overlook or downplay the importance of sexual and reproductive health issues for young people. FPA Provide a number of practical resources for young people with disabilities. Macmillan cancer care website has a booklet “relationships, sex and fertility for young people affected by cancer”

THE DH TOOLKIT Go to:Resources for professionals