Young Adult Rheumatology clinic(from 16-25 years old)

Dr Alison Kinder FRCPRheumatology consultant

Why?

• Unmet need in Leicester

• Young adults with chronic diseases have additional challenges in negotiating the complexities of their adolescence by virtue of their medical needs

Differences between adult centred and paediatric care

Adult care Paediatric care

Individual consultations Family consultations

Limited multidisciplinary team(often less access to psychosocial support)

More likely multidisciplinary team and psychosocial support

Payment for medication Usually free medication

Larger patient number Smaller numbers of patients

Consultation less likely to include vocational aspects

Educational and vocational aspects key to consultation

Shorter consultation time Longer consultation time

Procedural pain relief – less sedation or ga use

More sedation or ga use

Less tolerance of immaturity Greater tolerance of immaturity

Less chasing of patients who DNA Greater chasing of famillies who DNA

Less direct supervision of trainees Greater direct supervision of trainees

Less likely to see same dr at consecutive consultations

More likely to see same dr at consecutive visits

• “ emerging adulthood ” is a time of exploration, a crucial part of growing up and as such remains a time of continued vulnerability (Arnett 2000)

Several policies

• Royal college of nursing 2004• Department of health 2006• Department of Children, Schools and Famillies 2007• Royal college of physicians of Edinburgh 2008• Chief medical Officer 2008

• Review the evidence of benefit of good quality transitional care and setting out best practice models

Core set of principles

• Transition starts early and is a future focussed active process

• Young person centred and inclusive of family, carers and kinship groups

• Multidisciplinary involving paediatric and adult services with GP

For young adult

• Age appropriate• Developmentally appropriate• Culturally appropriate• Flexible process equipping him/her with skills

in communication, decision making, assertiveness, self care and self management

• Ultimate aim of transitional care is to enable adolescents to take control of their healthcare needs and emerge into adulthood with maximal function and potential

Young adult clinic

• Set up Jan 2011 in adult setting • Leicester Royal Infirmary• Only for 16 to 25 years old• Consists of – Consultant Dr Alison Kinder– Specialist nurse Toni Dorman

– May be SpRs present for training

• Accepting transfers of young adults with long term rheumatology conditions that live in Leicestershire from– Nottingham– Birmingham– Leicester– Transfers from other paediatric units for Leicester

university students

• I attend rheumatology paediatric clinic 1x/month in Leicester

• Try and meet patients prior to transfer from other centres

Current case load

• Mainly JIA • SLE• Sarcoid• Ankylosing spondylitis – If on methotrexate injections or biological therapy

requires transfer of prescription to adult service

New referrals

• Young adults with new presentations of rheumatological diseases

• Needs to be as named referral • Not on choose and book

• Clinic from Jan 2012 1x/month

Needs to be a service the young adults want

• Currently developing a questionnaire asking patients what they want from the service

• Informal feed back – Like to come to young adult clinic only– Meet other young adults– Get to see the same dr and nurse

Any questions?