Campaigns and reports

July 2016

Working with international partners benefits UK immunology, says British Society for Immunology (BSI)

Research is essential for driving forward new treatments for people affected by PID. The BSI's report on global research highlights the benefits that working with international partners brings to immunology in the UK. Read more here.

The full report ‘Immunology: an international, life-saving science’ can be accessed via the British Society for Immunology website and makes key recommendations for the government and others to ensure that this country remains at the forefront of immunological research now and in the future.

The report focuses on several key areas:

  • Immigration: UK immunology benefits from being able to attract the best and the brightest scientists from around the world.
  • Funding: International funding supports world-class UK research.
  • Collaboration: Our immunologists partner with excellence from around the world to increase the quality and efficiency of our research base.
  • Data sharing: The UK is leading the big data revolution to fuel our understanding of fundamental immunology and provide more targeted and effective diagnoses. 
  • Immunology as a global public good: Great science conducted in the UK can and does have profound effects on global health including tackling emerging infections

June 2015

Report from the Scottish Parliament's Cross Party Group on Rare Diseases by Rae McNairney, 10th June 2015

Kathryn Fergusson Head of Medicines, Scottish Government updated the group on the Access to New medicines for Rare Diseases.  The Scottish Government will double the amount of money available to fund treatments for people with area or end of life conditions by increasing the New Medicines Fund to £80 million for 2015/16.

The Scottish Medicines Consortium assesses medicines for use in NHS Scotland, which is resulting in an increasing number of treatments being approved for patients with very rare conditions or at end of life. The Scottish Government are currently working on the publication of a report regarding how the 2013/14 fund was spent however for patient confidentiality this will not be an easy process.  The Group will be kept informed of the progress.

Specialist Nursing for Rare Diseases - An extra 2.5 million will be invested in specialist nursing care. The first allocation has already been made - motor-neurone disease have been allocated £700,000  The Scottish Government will be engaging with patient groups through a short review of specialist nursing provision to determine where the remaining funding would be best targeted.

January 2015

  • The Northern Ireland Implementation Plan for Rare Diseases

You can download the draft plan and our consultation comments from this page on our website.

November 2014

7th November 2014 - PID UK joined 35 other organisations by signing to a letter to The Times newspaper indicating serious concern about the proposed new shake up by NHS England concerning co-commisioning of specialised services with local clinical commissioning groups (CCGs). The letter was co-ordinated through PID UK's membership of the Specialised Health Care Alliance.

The letter reads:

'Sir, The Health and Social Care Act 2012 has been much criticised. The decision to transfer responsibility for specialised services from local commissioners to NHS England was, however, recognised by all as a sensible step, providing certainty around standards and access to treatment where previously there had been little or none.

NHS England’s subsequent experience has been less happy, involving a substantial overspend and cumbersome decision-making, all with damaging effects for patients. These problems are, however, fixable and do not challenge the fundamental sense of planning specialised services and sharing the associated financial risk across the country.

It is therefore of serious concern that NHS England is now proposing to co-commission specialised services with local clinical commissioning groups (CCGs).

It makes sense for the NHS to collaborate at national and local level, but muddying budgets and responsibility between NHS England and CCGs promises a return to the postcode lottery of the past.

We write as members of the Specialised Healthcare Alliance.'

July 2014

  • Northern Ireland issue Statement of Intent for the UK Strategy for Rare Diseases

The Department of Health, Social Services and Public Safety (DHSSPS) in Northern Ireland has released a statement of intent outlining their plan for putting the UK Strategy for Rare Diseases into action.

  • Welsh Implementation Plan for Rare Diseases

Find out about this plan and the consultation responses here.

  • Launch of the Implementation Plan for Scotland

The 'It's Not Rare to Have a Rare Disease' report is the Scottish Government's response to the UK Rare Disease Strategy.

  • Launch of National Plan for Rare Diseases for Ireland

The plan envisages a combined approach with EU partners and Northern Ireland to diagnose and treat people with rare diseases.

You read about the launch here.

February 2014

Rare Disease Day 2014 update and events

  • World PI Week supports Rare Disease Day 2014

World PI Week and Rare Disease Day join have joined forces to give voices to people affected by rare diseases around the world. The theme for Rare Disease Day 2014 is 'Join for Better Care'.

Read their press release, circulated by IPOPI, the international organisation supporting people affected by PID here.  

Events

Representatives of PID UK attended receptions organised by Rare Diseases UK in Northern Ireland, Scotland and Wales.

  • NHS England's plans for delivering commitments on the UK Strategy for Rare Diseases

NHS England has published details setting out how it will play its part in delivering commitments set out in the UK Strategy for Rare Diseases.

  • Rare Disease implementation plan is launched by the Welsh Government

On Friday, 28th February, the Deputy Chief Medical Officer for Wales, Dr Chris Jones launched the Welsh Implementation Plan for Rare Diseases at the Institute for Medical Genetics at the Heath Hospital, Cardiff. The document is now available on the Welsh Government website here. A consultation period of 12 weeks is attached to the plan. You can read more about the plan's aim here.

  • Rare Disease event at the Scottish Parliament

This event was attended by Rae McNairney, our Scottish Patient Representative. Speakers included Alex Neil MSP, Cabinet Secretary for Health and Well-being, and Alastair Kent OBE, Chair of Rare Disease UK.  

Alex Neil discussed the Scottish Government's commitment to the 51 recommendations in the Rare Disease Strategy, and their future implementation. In addition he talked about the Route Map to the 2020 Vision for Health and Social Care in Scotland and highlighted a new system for the review for medicines from the Scottish Medicines Consortium (SMC). This new system will help ensure patients and clinicians have a greater on the approval of new drugs from May 2014.  These will mean implementation of a Peer Approved Clinical System (PACS), that will replace the Individual Patient treatment Request (IPTR) for using medicines not approved for regular use in the NHS.

The Scottish Government has yet to publish its Implementation Plan for Rare Diseases and released the following statement on the 27th February - http://www.scotland.gov.uk/Topics/Health/Services/RareDiseases

  • All Ireland Rare Disease Day event in Belfast

Our supporters, Mr and Mrs Ingleston, kindly attended this event on PID UK's behalf.

The Minister Alex White addressed the audience and spoke about the work being done by officials in Northern Ireland and the Republic of Ireland towards implementation of the Rare Disease Strategy. Details of the Minister's speech is available on the IPPOSI website and also a full account of the meeting, as featured in the Irish Medical Times, is available here

Ireland's National Plan for Rare Diseases is expected to be published in May 2014.

  • Eurordis, the European alliance of rare disease patients organisations launches Rare Disease Day video

This year's campaign focus is on “Care” and the video provides an overview of the great number of people involved in providing treatments and care for patients with rare diseases and their families. You can access the video here

November 2013

The UK Strategy for Rare Diseases is published by the Department of Health
Strategy aims to ensure people with rare diseases have the best quality evidence of care and treatment that the health systems in Scotland, England, Wales and Northern Ireland can provide. You can read the full report here.

Key elements of relevance to people affected by primary immunodeficiencies are empowering patients (page 11); screening programmes (page 13); dealing with delays in diagnosis and the need for clearly defined care pathways for patients who have no diagnosis (pages 17 & 18); the co-ordination of care including when treatment involves different specialties and services and the need for individualised care plans (pages 22-24).

The report ends with an ambitious UK commitment to 51 action points to implement the Strategy's vision, which has to become a reality by 2020.

Embedding research for patient benefit into the NHS

The Association of Medical Research Charities (AMRC) launched its support for a Vision for Research in the NHS. It gives practical steps that can be taken to make the statutory duty of the NHS to research real in practice.

The vision gives guidelines to help overcome some of these barriers and encourage researchers and patients, with practical proposals for action.

For patients this means:
    •    Each and every patient is offered opportunities to be involved in research
    •    Research in patient-centred
    •    Research is embedded in good care.

As part of the vision a poll of health professionals was done to gain an idea of their experience of, and attitudes to, research. The survey, carried out by ComRes, of 392 GPs hospital doctors and nurses, showed universal agreement that the NHS should support research into treatments for patients. But it identified a number of barriers to taking part in research, including pressure of clinical research, burdensome regulation and a lack of information about research opportunities.

You can find out more here.

Report launched on the impact of rare diseases

Genetic Alliance UK and Rare Disease UK launched their report on the issues faced by people affected by rare disorders. Several people affected by a range of primary immunodeficiencies contributed to the report.

December 2012

Publication of IPOPI PID Patient Needs and Outlook survey

This survey was carried out during the second half of 2011 and is based on completed questionnaires from 300 patients and care-givers of people living with a primary immunodeficiency and treated with immunoglobulin replacement therapy. Download the report here.

Report on funding into research on rare diseases

This report published by Rare Diseases UK gives recommendations to improve support that funding bodies such as Wellcome and the Medical Research Council give to research into rare diseases. Among the contributors were the CGD Society.

Download the report here