Campaigns and activities
January 2012
Posted on 31st January 2012 by info@pnh-alliance.org.uk
On the 18th January the PNH Alliance met with Nicola Sturgeon MSP, Deputy First Minister and Cabinet Secretary for Health & Wellbeing, to discuss PNH and the challenges patients face in the access to PNH treatment.
The PNH Alliance provided Nicola Sturgeon MSP with an overview of the disease, its impact on patients’ quality of life, and the recent medical research in the field.
The PNH Alliance further addressed patients’ need to gain better access to funding for Eculizumab for the treatment of PNH and demonstrated the impact the drug has on patients’ outcome on a number of case studies.
In particular, they explained that the current system, which allocates the responsibility for funding decisions to the individual health boards, has led to postcode lottery access to the PNH treatment for patients in Scotland.
They further discussed the need to include expert clinical evidence provided by PNH specialists into the IPTR process to ensure the best possible assessment of the patients’ clinical case.
Nicola Sturgeon was open to the views and concerns of PNH patients and agreed to examine the issue in order to improve access to PNH treatment.
The PNH Alliance welcomed the opportunity to address the issue with the Deputy First Minister and will continue working towards a review of the appraisal system for medicines for rare diseases in Scotland.
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Posted on 17th January 2012 by info@pnh-alliance.org.uk
In 2012 the PNH Alliance will continue to campaign for better care for PNH patients and profile other issues relating to the disease.
The Alliance will especially address the problem in Scotland, where, in contrast to the rest of the UK, treatment is not always provided on the NHS and funding decisions are taken on an individual patient basis, which has resulted in unfair access to treatment.
In response, the Alliance tabled a Public Petition in the Scottish Parliament last year to promote a review of the appraisal system of medicines for rare diseases in Scotland. We will continue to work with the Public Petition Committee to campaign on the issue in the Scottish Parliament.
In January, the PNH Alliance will meet with the Cabinet Secretary for Health and Wellbeing, Nicola Sturgeon MSP, to outline the challenges PNH patients face and discuss possible solutions to the problem. We will continue to work closely with the patient group PNH Scotland and further engage with MSPs and the Scottish Medicines Consortium.
Early this year we are also expecting the publication of the consultation on a national plan for rare diseases and look forward to working together with the Department of Health to improve access to medicines for rare diseases in the UK.
In order to bring the PNH community together, the Alliance is planning to organise a PNH conference in spring this year to update patients and clinicians on the progress of the campaign and the latest medical research.
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July 2011
Posted on 11th July 2011 by info@pnh-alliance.org.uk
The PNH Alliance has renewed its campaign to ensure fair access to treatment in for patients with PNH in Scotland.
In England and Wales treatment is available for all patients who need it, but in Scotland decisions are taken on an individual patient level by local health boards. This has resulted in a postcode lottery where some patients receive treatment that is recommended by their doctors whilst others are told that the NHS will not provide it.
The PNH Alliance is campaigning to ensure that treatment is available for all patients who need it. We have been working closely with MSPs, who have tabled questions and written to the Cabinet Secretary for Health and Wellbeing, Nicola Sturgeon MSP, to ask her to intervene.
There is a strong feeling within the Scottish Parliament that the current system of post-code prescribing is unfair, and MSPs are determined to support PNH patients by securing a change in the government’s policy.
We have also requested meetings with the Chair of the Scottish Medicines Consortium and the Chief Executive of one of the local health boards that was not providing treatment for patients to discuss how we can work together to solve the problem.
We will continue to put pressure on the Scottish Government to ensure fair access to treatment for PNH Patients. The PNH Alliance will be working with PNH Scotland, a new patient group that has been established by Lesley Loeliger, who is a PNH patient, and which represents patients across Scotland.
Together we hope to ensure that all PNH patients receive they treatment that they need, wherever they live.
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June 2010
Posted on 16th June 2010 by info@pnh-alliance.org.uk
RDUK press release:
Please help us to build a picture of rare diseases in the UK from the perspective of patients, families and carers
Rare Disease UK is conducting a survey of patients’ and families’ experiences of access to care, treatment and support in the UK. This survey will be crucial in facilitating our campaigning and awareness raising work. The results of the survey will:
- Help gain an understanding of some of the issues that matter to patients and families
- Be put to politicians and policy makers to highlight areas of concern/good practice
- Be published in a new RDUK booklet of patients’ and families’ experiences – this will be launched at a reception at the House of Commons in the autumn
- Help inform our working groups and our report into a strategy for rare diseases (which will be launched on Rare Disease Day 2011)
- Assist in raising awareness of rare diseases through the media
By participating in the survey you really will be helping to inform our work. If you are a patient organisation, please encourage your members to respond; if you work with people affected by a rare disease, please let them know about the survey. The more people that participate the more weight the results will carry!
The survey should take no longer than 20 minutes to complete. There are boxes at the end of every page if you would like to elaborate on your answers – all the additional information we receive will be extremely helpful, especially to inform the report on a strategy for rare diseases.
The survey is spilt into sections looking into:
- Research
- Diagnosis
- Commissioning and planning (treatment and specialist centres)
- Information and support
- Accessing coordinated care
The deadline for responses is the 31st of July
To participate in the survey please visit the following website: http://www.surveymonkey.com/s/QZJM8PP
If you require a paper copy, or if you would like paper copies to send to other people, please contact Stephen or Lauren at stephen@raredisease.org.uk or lauren@raredisease.org.uk 020 7704 3141
Thank you in advance for your help!
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May 2010
Posted on 13th May 2010 by info@pnh-alliance.org.uk
The survey element of the inquiry is now closed, and a full analysis of the findings is being prepared. Those who took part in the survey include the British Porphyria Association, Aplastic Anaemia Trust, Duchenne Muscular Dystrophy, Hypothyroidism UK and Rare Disease UK, and we would like to thank them for their assistance – we reached a total of 120 completed surveys.
The ambitions of the inquiry remain the same and we are encouraged to have received positive communications from the travel insurance industry, and we are now seeking to work with them to establish a forum to ensure we meet our objectives:
- To give a collective voice to patient experience in accessing travel insurance
- To better understand the barriers to travel insurance from an industry perspective and demonstrate good and bad practice
- To offer a political platform to raise issues of access to travel insurance
- To understand the government role in supporting the rare disease community in accessing travel insurance
- To make recommendations for improved access and possible government action
Once the findings of the survey have been confirmed we will provide a further update along with information on the forum, which will seek political support for the rare disease community in relation to access to travel insurance.
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October 2009
Posted on 16th October 2009 by info@pnh-alliance.org.uk
The PNH alliance seeks to profile the issues surrounding PNH and other rare diseases through an ongoing process of informing, educating and working with healthcare professionals, government agencies and politicians.
As part of our programme of activity we are planning to conduct an inquiry into access to travel insurance, and we would like to request the Batten Disease Association partner us in this inquiry. We are also approaching the Gaucher’s Association, British Porphyria Association, Climb and the British Haematology Society to join us as partners to ensure the inquiry has reach and also secures the profile it deserves. We are aware that the Genetic Interest Group is currently undertaking a more substantive inquiry in financial services and we are liaising fully with them to ensure the two inquiries complement each other.
We propose sending the inquiry questions to a range of other stakeholders including other charities, clinicians, government and the insurance industry.
The inquiry would lead to the production of a report, which would make recommendations, and we hope it will be launched at a parliamentary forum. The outcomes of the inquiry and subsequent report would:
- Give a collective voice to patient experience in accessing travel insurance
- Better understand the barriers to travel insurance from an industry perspective
- Understand the government role in supporting the rare disease community in accessing travel insurance
- Offer a political platform to raise issues of access to travel insurance
- Make recommendations for improved access and possible government action
To complete the survey please click the following link:
http://www.surveymonkey.com/s/PNHallianceTravelInsuranceInquiry
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May 2009
Posted on 12th May 2009 by info@pnh-alliance.org.uk
Launch of the PNH alliance
A Reception was held in the House of Commons to launch the PNH alliance and to welcome the government’s funding decision, which was attended by over 70 patients, healthcare professionals, MPs and Peers. The event was addressed by leading parliamentarians, Professor Pete Hillmen of Leeds University Hospital and the Minister for Health Ann Keen MP.
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