Current Policy Campaigns
If you would like to see more work like this please donate using the button at the top of the page.
31/10/2011
The NHS Future Forum has been gathering patients views on the education of professionals and on provision of information
You can see the consultation here, and our responses to information here, and education of professionals here.
17/10/2011
NICE National Quality Board Engagement Exercise
A key part of the reform of the NHS in England will be the publication of Quality Standards to ensure excellence in care delivery. NICE has published its proposed library of topics here, accompanied with a letter of consultation here. You can read our response to this consultation here. In it, we discuss the possibility of a set of general Quality Standards, grouped around medical specialty or pathology of conditions, which could ensure that rare genetic conditions are not left out of these definitions of high quality care.
11/10/2011
Our briefing to the House of Lords on the Health & Social Care Bill
As the Health & Social Care Bill continues through the legislative process, it has reached its second reading in the House of Lords. Here is the briefing we circulated to the Lords.
30/09/2011
Response from Sir David Nicholson
Sir David's response is encouraging, stating that an executive director of the NHS Commissioning Board will be 'lead' for specialised services, and describing how specialised services will be integrated within the organisation. We have written back, asking for further clarification on how the budget for specialised services will be finalised. Our latest letter is here.
15/09/2011
Letter to Anne Milton regarding counselling for pregnant women about termination of pregnancy
Following the recent debate in Parliament regarding independent counselling in advance of a termination of pregnancy, we wrote to the Minister responsible, Anne Milton MP. We wrote to highlight the case of women who require a termination of pregnancy because of an antenatal diagnosis. We believe women in this situation should be supported in the decision they have had to make and that they should not have to make any further justifications. You can read our full letter here.
29/07/2011
On Thursday 29th July, we wrote a letter to David Nicholson, Chief Executive of the NHS, in response to his publication "Developing the NHS Commissioning Board". In it, we highlighted the need for a designated national director at the highest level of the NHS Commissioning Board with a responsibility for specialised services, and the need for a non-executive member of the board of the NHS Commissioning Board (confusing nomenclature which needs to be addressed) to champion this work. We also comment on the need for clarity on the budget and structure for specialised services, and the need for better integration through out the NHS for the services that our member's patients and families access. Read our letter here.
20/07/2011
Value-Based Pricing consultation
This month also saw the publication of the Government's response to the Value-Based Pricing consultation. Their response is broadly encouraging. We have written a short review of their response, which you can read here. We will continue to follow this issue as it develops.
01/07/2011
General Medical Council consultation on Prescription Guidance
This consultation covered the issue of "off-label" prescribing of medicines, when a medicine is prescribed for a condition it does not have a market authorisation for; and of "unlicensed" treatments, medicines which have not been through the market authorisation process yet. We responded to these components of the consultation. You can read the original consultation here. Our response is here.
01/06/2011
The European Commission has published a concept paper on the future of governance of clinical trials in the EU, which can be read here. As a member of the European Genetic Alliances' Network, we have responded here.
01/04/2011
Genetic Alliance UK's response to the Department of Health's White Paper on Public Health
We have submitted our views on the proposals for a new public health system in England. As our responses note, screening is the top priority public health issue for Genetic Alliance UK and our members. Our response to the White Paper, here, and to the public health commissioning consultation, here, highlight the value of screening as a means for early diagnosis of many genetic conditions.
24/03/2011
Genetic Alliance UK's response to the Department of Health's consultation on the Value-Based Pricing
Genetic Alliance UK has responded to the Department of Health's consultation on Value-Based Pricing. Our response calls for new measures of value to cover all aspects of treatments that are valued by patients, and for the system to include treatments for rare diseases. We also explain our views on how patients can be equal stakeholders in the decision making process, as they are in European regulation of pharmaceuticals. The original consultation can be found here
31/01/2011
Genetic Alliance UK's briefing for the Second Reading of the Health and Social Care Bill
Genetic Alliance UK has prepared a briefing for MPs in advance of the Second Reading of the Health and Social Care Bill on the 31st January. This has been distributed to MPs, and the questions suggested within aim to prompt MPs to seek clarification from the Secretary of State for Health as to his intentions regarding services for those affected by genetic conditions.
19/01/2011
Genetic Alliance UK's response to the Department of Health's consultation on the Cancer Drugs Fund.
Genetic Alliance UK has responded to the Department of Health's consultation on the Cancer Drugs Fund. Our response describes our disappointment at the move away from progressive policies to fund and promote innovative treatments, such as the Innovation Pass, and the move towards the creation of an unfair and discriminatory scheme, the Cancer Drugs Fund. The original consultation can be found here.
14/01/2011
The Department of Health consultation on choice and information
The latest two consultations from the Department of Health arising from the White Paper published last year were on the closely related subjects of choice and information. Genetic Alliance UK has submitted a response to each consultation, highlighting the special issues around choice and information for patients with genetic conditions.
Our response to the Information Revolution consultation calls for professional support for patients to interpret the information they are given access to; asks for the privacy issues that surround genetic patient information not to stand in the way of access to the information revolution for our member groups and their members; and highlights the value that patient organisations can have as providers of information.
Our response to the Choice and Control consultation describes the lack of choices available to those with rare genetic conditions, and again highlights the guidance that patient organisations can provide to patients who are given options in their healthcare pathway.You can find the original consultations here.
11/01/2011
Review of UK research governance published
Genetic Alliance UK applauds the recognition by the Academy of Medical Sciences (AMS) in their review of research governance of the lengthy and burdensome nature of the current research regulation systems in the UK. Their report, "A new pathway for the regulation and governance of health research" was published today and can be found here.
We believe the proposals for a single point of contact with a single Health Research Agency will facilitate progress through research governance by small organisations such as Genetic Alliance UK and our member groups.
We are pleased to see promotion of a proportionate approach to research regulation, which will ensure low-risk non-invasive research projects are not subject to the same level of scrutinity as projects which propose significant risks to participants.
A single UK-wide Health Research Agency will promote UK research, allow us to capitalise on the vast resource that the NHS could provide as a research tool, and we hope, facilitate progress in areas of unmet health need, such as the large number of genetic conditions without a cure or a treatment.
We regret that wider consequences of the proposed break up of the Human Fertilisation and Embryology Authority (out of the scope of this inquiry, which focussed solely on its research governance role), continue to be unexamined. As we stated in our response to the AMS review's second call for evidence, the future of the ethical decision making component of the HFEA (essential to the regulation of preimplantation genetic diagnosis) has not been examined in depth after the announcement of plans to dissolve the HFEA.
Our response to the first and second call for evidence by the AMS review can be found here and here.
We hope that a new Health Research Agency will be established as soon as possible.
11/10/2010
Equity and excellence: Liberating the NHS
In July this year the Government published its plans to reorganise the NHS in England. As we promised in our initial response, we have now had a close look at these proposals and considered the impact they will have on our members and the patients and families they support. Our response to the White Paper can be read here.
In addition to the broad ranging White Paper, the Department of Health launched four more detailed consultations explaining in greater detail how the proposed changes will be implemented:
- Liberating the NHS: commissioning for patients. One of the biggest proposed changes is to the system by which services are planned and paid for. This consultation document can be read here, and our response, which includes an explanation of our views on how specialised services should be organised can be read here.
- Transparency in outcomes - a framework for the NHS. This consultation sets out the Government's plans to monitor healthcare delivery and identify improvement areas. Our response, available here, includes an explanation of our concern regarding the impact these proposals could have on the visibility of rare genetic disorders in the new data collection systems.
- Liberating the NHS: increasing democratic legitimacy in health. Here, the Government describes plans to roll-out local HealthWatch organisations and better integrate Local Government and social care with healthcare delivery. Our response highlights the need for national equivalents of local health governance systems.
- Liberating the NHS: regulating healthcare providers. This document explains the means by which healthcare providers will be held to account in the new system. Our response calls for measures to ensure that greater freedom for healthcare providers does not lead to gaps in service delivery.
We will continue to communicate the needs of our members during this healhcare reform process, and look forward to being involved in the future legislative process.
14/09/2010
The Academy of Medical Sciences Review of the Regulation and Governance of Medical Research
Following the Department of Health's review of arm's-length bodies, the Academy of Medical Sciences made a second call for evidence for its review of the regulation and governance of medical research. We stressed the need for a streamlining of the governance process for small charities, as both ourselves and some of our members have experienced difficulties with the current complicated process necessary to gain research approval. We also took the opportunity to stress the need for the continuation of expert review for the licensing of preimplantation genetic diagnosis, a role currently carried about the HFEA, which will be abolished in 2013.
Genetic Alliance UK response to the AMS Review of Regulation and Governance of Medical Research.
14/09/2010
Refreshing the National Carers Strategy
The previous Governments carers strategy was published in 2008, the current Government is refreshing this strategy as part of informing the Comprensive Spending Review, which is due to be published in October 2010.
Genetic Alliance UK response to Refreshing the National Carers Strategy
30/07/2010
The European Commission's consultation on their review of the In-Vitro Diagnostics Directive can be read here. Genetic Alliance UK submitted a summary of our views on the consultation's proposals to the MHRA in advance of our response to the European Commission. Our response to the MHRA can be read here.
Further to this work we also submitted a response to the European Commission in September 2010 as part of the European Genetics Alliance Network (EGAN). EGAN - IVD response.
01/06/2010
The Academy of Medical Sciences has conducted a review of the regulation and governance of medical research. Our response can be read here.
19/02/2010
Strengthening National Commissioning
Genetic Alliance UK and Rare Disease UK respond to this Department of Health consultation.
12/02/2010
Innovation Pass pilot
Genetic Alliance UK and Rare Disease UK respond to this Department of Health consultation.
06/01/2010
30/11/2009
Patient's Views on Animal Research
A joint statement from European Patient Organisations in response to the review of Directive 86/609/EEC on the protection of animals used for experimental and scientific purposes.
European Genetic Alliances Network (EGAN); European Men's Health Forum (EMHF); European Multiple Sclerosis Platform (EMSP); European Patient's Forum (EPF); Rare Diseases Europe (EURORDIS)
01/10/2009
Statement of best practice for critical illness cover - Association of British Insurers
Joint response from the Genetic Alliance UK and Ataxia UK