Annual Report and Accounts 2012 – 2013 Annual Report and Accounts Welcome to our Annual Report and Accounts for 1 April 2012 – 31 March 2013 We have written this year’s report Contents to be as accessible to as many About us 3 people as possible. In the first half Chair and Director’s letter 4 of the report, we have included Highlights of the year 5 an overview of our achievements Health service development 6-8 in this year and our plans for the Rare diseases 9 future. In the second half of the Information and support 10 report is the trustees’ report, our Championing biomedical science 11 financial statements and accounts Access to medicines 12 Working in Europe 13 for the year. Looking ahead to 2013 - 2014 14 Trustees’ annual report 15-16 Treasurer’s letter and financial review 17 Independent auditor’s report 18-19 Statement of financial activities 20 Balance sheet 21 Notes to the financial statements 22-28 Acknowledgements 29 Membership 30-31 2 Genetic Alliance UK Genetic Alliance UK About us There are over Genetic Alliance UK is the We are the only organisation in national charity of over the UK that provides a voice for all 6,000 160 patient organisations patients and families affected by genetic conditions on a European, UK different genetic supporting all those affected by and devolved nation level. genetic conditions. Our aim is conditions to improve the lives of people About genetic conditions affected by genetic conditions, Genetic conditions are life-long ensuring that high quality and serious illnesses, affecting 4 out of every services and information are multiple systems of the body. Many S are progressive, meaning affected E available to all who need them. I individuals lose their health, quality of B What we do life and may die prematurely. Currently, A few genetic conditions can be cured, B Supporting: We seek to raise and few have effective treatments; but 100 born in the UK have awareness of genetic conditions and all individuals and their families need improve the quality of services and appropriate care and support, as well a genetic condition information available to patients and as timely and accurate diagnosis. families. Patients and families with genetic Campaigning: We actively campaign conditions often have a high level of on behalf of those with genetic unmet need. conditions on issues of policy and It is vital that medical research sheds light 6 out practice to influence governments, on these conditions in order to develop policy makers, industry and care effective interventions and therapies and providers such as the NHS. that they are made available to patients of 10 PEOPLE Uniting: We provide a united voice as soon as possible, with appropriate for all those affected by genetic care and support, to improve health and are likely to develop a conditions, enabling us to work save lives. disease that is partially together towards the common goal genetically determined of making life better for patients and families at risk. by the age of 60 Annual Report and Accounts 2012 - 2013 3 From the Chair and the Director Letter from the Chair and the Director 2012 – 2013 has been a very busy Other noteable achievements this year for us, and we are proud of our year include we were one of the work and our achievements. first patient groups to sign up to the AllTrials campaign calling on We are particularly proud that we greater transparency for clinical trial influenced and campaigned for data. We were runners up in the changes within the reorganisation GlaxoSmithKline and King’s Fund of commissioning NHS specialised IMPACT awards this year, meaning services in England, and supported we were in the top 20 charities from our member groups to be centrally over 400 entries. It is great to receive involved in shaping the services for recognition of our work and our their own conditions. efforts. We are delighted to have published Finally, we are now an alliance of Christopher J Friend our Route Maps Toolkit this year. Route 162 patient groups, uniting those Chair Maps can improve information as well affected by genetic conditions across as coordination of health and social the UK. Our aim is to keep growing care for people with rare genetic our membership numbers, and to keep conditions, and the Toolkit will enable improving how we work with our patient groups to devise their own members. condition-specific Route Map, which in turn will support many more patients Looking ahead, next year promises and families. to be a busy and exciting year. We look forward to working actively with This year saw the Scottish Government members, supporters and friends as announce the creation of a ‘Rare we continue to Support, Campaign Disease Drug Fund’. It followed a and Unite on behalf of all those great deal of work in partnership with affected by or at risk from genetic other organisations and many of our disorders. We thank our members and Alastair Kent member groups and families based in all our partners for your support, and Director Scotland. We look forward to seeing we look forward to working with you the initiative providing medicines that in 2013 - 2014. will help many people. 4 Genetic Alliance UK Highlights of the year Highlights of the year • Earl Howe, Minister for Health • Our membership on the Ethics & • Charity of the Year at announcing the establishment of the Governance Team on the Prime Genzyme Haverhill Rare Disease Stakeholder Forum at Minister’s 100,000 genome project • 162 member groups – our parliamentary reception • Two SWAN UK family days our largest number ever • Publication of a fair and equitable for families of children with • The Scottish Government All-England Commissioning undiagnosed genetic conditions announcing the creation of a Policy for preimplantation • 350,000 unique visitors to ‘Rare Disease Drug Fund’ genetic diagnosis our websites • 0.8k Investment income • 112.8k Voluntary income Income 571.4k • 721k • 36k Other Charitable activities • 39.6k Expense Governance 613.6k • 678.5k • 25.3k Charitable Generating activities voluntary income Annual Report and Accounts 2012 - 2013 5 Health service development Health service development Genetic Alliance UK advocates We also responded to the Children To support patients, families and for improved health services, and Young People’s Health Outcomes patient groups in responding to the we support the acceleration Framework. We drew on the real-life Clinical Reference Groups’ Service experiences of families of children Specifications and Commissioning of scientific innovations into with undiagnosed genetic conditions Policies public consultation, we healthcare that will make a around issues of communication, produced free webinars full of helpful difference in peoples’ lives. equity and respect; giving decision- information. No other organisation makers a sense of the difference that from the public, private or voluntary NHS England reorganisation the Framework could make to families sector provided as much support or if used effectively. advice to help with this consultation. This year we have been actively Our webinars were viewed over 450 influencing the decisions regarding the Specialised services in England times, and feedback from users was reorganisation of the NHS in England, overwhelmingly positive. ensuring that people with rare A major change for the NHS in and genetic conditions are treated England from April 2013 was the Our Director is vice chair of NHS equitably and are able to access the change to national commissioning England’s Public and Patient services that they need. of specialised services. Detailing the Engagement Steering Group and England-wide Service Specifications we influenced NHS England’s We responded to NHS England’s and Commissioning Policies were engagement with patients and patient (previously the NHS Commissioning multidisciplinary groups of clinical groups. We are pleased that from Board) draft mandate, emphasising staff, commissioners and patient or summer 2013, there will be up to four that the intended Outcomes patient group representatives called PPE members on each of the Clinical Framework should provide an Clinical Reference Groups. Reference Groups, strengthening the equitable record of patient outcomes patient voice in the NHS. across the NHS, covering areas We worked hard to nominate and beyond access and socio-economic support our own members for the We are also a member on NHS issues. We were clear in stating that Clinical Reference Groups’ patient and England’s National Commissioning the Framework should not marginalise public engagement (PPE) places. Over Board’s ad hoc Clinical Priorities and disadvantage patients with one-third (40 out of 112) of the PPE Advisory Group. This committee complex, rare and undiagnosed members for 2012-2013 were from had the responsibility of determining conditions. our member groups, giving people national commissioning priorities of with genetic conditions the chance to specialised services for all of England. shape and influence the specialised services they need. 6 Genetic Alliance UK Health service development Daniel and Sophia Nicholls Developing non-invasive Preimplantation genetic ‘I think we would prenatal diagnosis services diagnosis – access for families have had a lot more The technology to allow non-invasive across England heartache if PGD had prenatal diagnosis (NIPD) for a range From April 2013, preimplantation not been an option. I of single gene disorders including genetic diagnosis (PGD) will be Down’s syndrome is advancing nationally commissioned in England. wouldn’t swap a day rapidly, and gauging the opinions Through our PPE role on the Medical of our lives; it’s been a of women who have or are likely to Genetics Clinical Reference Group, we use it, to inform its use is important. advocated for a Commissioning Policy real blessing’ We asked patients and healthcare that is fair and equitable, bringing an Susanna Nicholls, a carrier of professionals what they want from end to the postcode lottery.