Consultant Nurse Learning Disability Better health - healthier lives: Getting care right for people with learning disabilities Jim Blair Consultant Nurse Learning Disability Jim.Blair@gosh.nhs.uk Twitter @jimgblair

Hospitals and health service can be scary places………………………….

Parent & Author of Special Parent Handbook What I would wish for? Yvonne Newbold Parent & Author of Special Parent Handbook

Need for change Population who need support Congestion in current services Cost

Some statistics People with learning disabilities are 58 times more likely to die by the age of 50 Women with learning disabilities die on average 20 years younger than women without learning disabilities and men with learning disabilities 13 years younger. 3 people a day dying avoidably in NHS hospitals YET Less than 50% of NHS hospitals have LD nurses working in them WE ARE THE CHANGE THAT IS NEEDED

Think beyond the norm ACT creatively

Learning Disability Lists Alerts on system Prepare for a person coming in Make care adjustments Monitor outcomes and experiences Improve care

Reasonable Adjustments What is reasonable?

Make reasonable care adjustments - consider: T Time – take time to work with the patient E Environment – alter the environment e.g. quieter areas, reduce lighting and waiting A Attitude – have a positive solution orientated focus C Communication – find out the best way to communicate with the patient and also communicate this to colleagues H Help – what help does the patient need and how can you meet their needs The TEACH approach was adapted from the one created by Hertfordshire Community Learning Disability Team

Enhancing care and experiences

Buzzers to ease waiting You can go & come back when You are next

Adjusting Care -Think Differently ACT Creatively Alerts and Lists in the community Double appointments Environmental changes e.g. dimmer switches, videos Information in easy to understand format Learning disability specific clinics Health checks and patient held records Flexible appointment times No fixed visiting times Minimising waiting Increasing support for the person Hospital Passport Changing places toilets – clinic alterations / adaptations – environmental reasonable a’s 13

patients with learning disabilities slower The Learning Disability Protocol for Preparation for Theatre and Recovery Discuss the patient's needs with them and their family/carers. Use ‘comforters’ to relax the patient pre op and in recovery .  Document and handover to colleagues.              Lower levels of noise and light Place the patient in a quiet area within recovery Ensure parents/carers are present and involved. Gradually recover observing how the patient is progressing and ensuring pain has been assessed and reviewed If the patient is disturbed or distressed in Recovery please consider: 1. Call an anaesthetist to use sedation to induce a relaxed, sleepier state. 2. Increase levels of sedation as required. Recover patients with learning disabilities slower than those without one

Experts by Lived Experiences Engage people with LD and families in service design, accreditation, delivery, evaluation, evolution and staff training THEN we will get the culture and care right

Central roles of Learning Disabilities Nurses • Effectively identifying and meeting health needs; • Reducing health inequalities through the promotion and implementation of reasonable adjustments; and • Promoting improved health outcomes and increasing access to (and understanding of)

Annual Health Checks for people with a learning disability over 14 yrs Better Care – Healthier Lives Thoughts, feelings, moods Any other health problems build into a health action plan and referral options

Annual Health Checks for people with a learning disability over 14 yrs Better Care – Healthier Lives : Epilepsy Diabetes Urine test Pain Heart Health Any other health problems

Behind every behaviour change consider a health reason physical or mental health issue

What can I do to make care better? How can I make sure it happens? How I can help make change happen? What can I do to make care better? How can I make sure it happens? What else can I do to effect the change that needs to happen?