Healthcare in the UK Margaret Costello – Gorlin Syndrome Group

Healthcare in the UK The National Health Service NHS All UK residents Free at the point of need Paid from taxation + Private Health Plans

NHS – a brief history  Came into existence on 5 th July 1948  Financial restrictions of a centrally funded service  Advances in medical knowledge, medicine and technology  People living longer  Re-organisation – a constant  In recognition of the deficiencies of the service  1978 – 30 th anniversary of the NHS  1989 – huge injection of cash and the NHS Review  National Health Service Reform and Health Care Professions Act  Lord Darzi’s Report – Next Stage Review 2008  Patient and Public Involvement / Consultation  Patient led NHS

Gorlin Syndrome – patient feedback  Negative feedback throughout the 1990s  Long term medical condition requiring regular monitoring and timely treatment  Delays in diagnosis and treatment  Waiting lists and access to services  Inequality of services - post code lottery!  Choice?

Campaigning on behalf of patients  National Voices  previously Long Term Conditions Alliance  Skin Care Campaign  England, Northern Ireland, Scotland and Wales  Genetics Interest Group (GIG)  Rare genetic conditions  Rare Disease UK  Rare Disease launch coincided with Rare Disease Day 2009 “6000 rare diseases affecting over 3.5 million people (1 in 17) in the UK. NHS services to support people with rare diseases remain patchy and poorly integrated, meaning that thousands of UK families with rare diseases struggle to access the help and support they need”

Rare Disease Action Plan  How will this benefit the UK? A National Strategy for integrated service delivery for families affected by rare disease would aim to create efficiency in expenditure and service allocation. Aims:  help to make the most efficient use of the limited NHS resources available;  support the Government’s health research agenda, including strengthening translational research;  facilitate early and correct diagnosis and timely treatment, which could offer improved health and quality of life for people with rare diseases;  ensure the UK keeps pace with other EU countries that have adopted national plans on rare disease.

Breakthrough - NICE Guidelines  National Institute of Clinical Excellence (NICE)  Good practice guidelines for healthcare professionals  Consultation  Patient and Public Involvement  Improving Outcomes for People with Skin Tumours including Melanoma  Patients who need specialist diagnosis should be referred to a doctor trained to diagnose skin cancer  Skin cancer teams should work to agreed protocols  Protocols should cover the management of care for people in high-risk or special groups (Gorlin Syndrome)  Follow-up care plans

Progress  Improvements to date  Shorter waiting lists  Improved access to services and treatments  Choice  Multi disciplinary teams for care of long term conditions  Review of prescription charges  Cancer patients  Exemption from prescriptions charges for all cancer patients with effect from April 2009  Patients with long term medical conditions  Currently under review but probable that exemption from prescription charges will come into effect April 2010

Patient feedback now  Recent feedback from GS patients  Early diagnosis still a problem for some (more about the condition than the NHS)  It seems less of a battle to gain access to services and to timely and appropriate treatment  More research is definitely needed – it is pleasing to see advances are being made but a long way to go!  Things have moved on although some services still patchy  It all feels much more patient focussed than ever before

Looking to the future  Maintain improvements in service delivery  Centres of excellence  Equality and choice  Rare Disease Action Plan  Fully integrated services to support people with rare diseases  Early and correct diagnosis and timely treatment  Research  Clinical trials  Appears to be little going on in the UK for rarer conditions

GSG – Our future role  Maintain and further develop links with  Medical advisors  British Association of Dermatologists  Other disciplines  Ensure Gorlin Syndrome remains ‘on the map’  Continue to raise awareness and ensure patient need is met  Promote research  Into the various aspects of the condition  And lastly but not least  Continue supporting patients and their families affected by Gorlin Syndrome