The AAT joins The Specialised Healthcare Alliance What is the Specialised Healthcare Alliance (SHCA)? The Specialised Healthcare Alliance has been established to seek uniformly high levels of care and access to all evidence-based treatments by: Advocacy and campaigns on behalf of people with specialised medical conditions (including rare illnesses) Using all channels to raise the profile of specialised healthcare Collecting and disseminating authoritative information about the effectiveness of arrangements for specialised commissioning Working with all interested parties to address and remedy problems where they arise, including integration within health and between health and social care. In conducting its work, the Alliance focuses exclusively on overarching policies and structures relating to specialised care and does not address individual therapeutic issues. The Alliance has no political affiliation and seeks to work across all political parties. Why it's important to be a part of the SHCA? The SHCA is providing us with a unique opportunity to get closer to the machinery that shapes national policy in relation to specialised healthcare and rare disease pathways. By being part of the Alliance, we are able to access the latest updates in relation to the development of the Rare Disease Strategy, especially its next iteration when it expires in 2020, and can make sure the voice of our patient community is represented. The SHCA also enables us to become better informed in relation to the development of the Integrated Care System and prepare us for playing our role effectively as a voluntary sector organisation. Useful updates To mark the International Rare Disease on 29 February 2020, the SHCA have engaged with rare disease charities in producing a letter to the Editor of the Times (featured on Saturday, 29th Feb 20). This letter calls on NICE and NHS England to update their processes so that people with rare and complex conditions have fair and equal access to new drugs. The AAT has signed up to this. You can access the letter - here. We're also urging you to approach your MP, championing our cause and raising awareness of the need for equitable access to meds by rare disease patients. The letter template can be dowloaded - here. More information on the NICE reform and its role in meds approval can be downloaded - here. The latest update on the implementation of UK's Rare Disease Strategy, published on 26 February, is available - here. National Genomics Healthcare Strategy update - the Strategy was first announced in February last year and is now pencilled in for publication at the end of March. It is expected that the Strategy will both set out the current state of play of the genomics sector, as well as articulating a vision for global leadership over the next 10 years. Here is a recent presentation from NHS England. The exact scope of the Strategy will be determined by the funding settlement in the March Budget, though we understand that the following themes are likely to feature: Education - addressing concerns around the use of genomics (i.e. data privacy, health safety, distinction between genomics and gene editing/gene therapy) Prevention – utilising genomic data to support ‘smarter’ screening for potential ill-health Workforce – taking steps to improve ‘genomic literacy’ among GPs and genomic counsellors Access to data – facilitating greater access to genomic data for research purposes, with a focus on areas such as neonatal care Treatment – ensuring that pharmacogenomics is embedded in the healthcare system where appropriate Designing Integrated Care Systems - NHS England published on19 June 2019 Designing integrated care systems (ICSs) in England, building on the ambition set out in the NHS Long Term Plan that every part of the country should be an integrated care system (ICS) by 2021. This document provides an overview of NHS England’s vision of how the transition between current organisational arrangements and the development of ICSs can be achieved. The summary can be accessed here. NICE review - NICE has published a new dedicated webpage on its review of its processes and methods, setting out information on the objectives, timelines and stakeholders involved. Here is a document that sets out how patient organisations can be involved. Rare disease insert - update on the NHS rare disease ‘insert’ to the standard NHS contract which was first set out in NHS England’s Implementation Plan for the UK Strategy for Rare Diseases. You can read the slides here. In summary the insert requires health providers, to ensure: There is a person responsible for coordinating the care of any patient with a rare disease That every paediatric patient with a rare disease has an active transition to an appropriate adult service, even if that adult service is not the commissioning responsibility of NHS England That every patient with a rare disease has an ‘alert card,’ which includes information about the patient’s rare disease; any particular aspects of the treatment of that rare disease that need to be taken into account in providing care to that patient; and details of how to contact an individual expert in that patient’s care Letter sent from the Minister of State for Health to cancer charities. You can read it here. As you will see the letter includes some of the same detail Baroness Blackwood shared with members last week on preparations for leaving the EU, including information on medical research and serious shortage protocols, as well as some more specific information on reciprocal healthcare pertaining to proton-therapy in Germany. The letter also includes information on the workforce, stockpiling, (including plans for medical radioisotopes) and the NHS Long Term Plan. We will keep this page regularly updated as we hear more from the SHCA. Thank you for reading!