Politics and policy
July 2010
Posted on 16th July 2010 by info@pnh-alliance.org.uk
Ian Liddell-Grainger (Conservative MP for Bridgwater and West Somerset) asked questions in the House of Commons in relation to the treatment of ultra orphan diseases.
12/07 – House of Commons – Written Answer: NHS: Drugs
Ian Liddell-Grainger (Conservative, Bridgwater and West Somerset): To ask the Secretary of State for Health what plans he has for the future appraisal of drugs for the treatment of ultra orphan diseases.
Simon Burns (Minister of State for Health): In the great majority of cases the National Institute for Health and Clinical Excellence (NICE) will continue to appraise important new drugs. However, for a small number of drugs for very small patient populations, where it is not appropriate for NICE to carry out an appraisal, it may be more appropriate for a drug to be considered by the Advisory Group for National Specialised Services as part of the arrangements for national specialised commissioning.
13/07 – House of Commons – Written Answers
Ian Liddell-Grainger (Conservative, Bridgwater and West Somerset): To ask the Secretary of State for Health what the remit is of the Advisory Group for National Specialised Services.
Simon Burns (Minister of State for Health): The role of the Advisory Group for National Specialised Services will be to advise on:
- which services and technologies should be nationally commissioned;
- which centres should provide them;
- the annual budget for nationally commissioned services and technologies; and
- the high level strategy for nationally commissioned services and technologies.
Liddell-Grainger (Conservative, Bridgwater and West Somerset): To ask the Secretary of State for Health what plans his Department has to implement the provisions of the Council Recommendation for a European Action on rare diseases.
Anne Milton (Parliamentary Under-Secretary for Health): The Department is working with the Devolved Administrations and key interest groups to develop a plan for rare disease by 2013 in line with the Council’s recommendation.
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Posted on 16th July 2010 by info@pnh-alliance.org.uk
On 12 July the Department of Health published the NHS White Paper called Equity and Excellence: Liberating the NHS. This is a paper documenting the Coalition Government’s healthcare policy over the next 5 years and includes some significant changes to that proposed by the previous Parliament. This paper will be put out to consultation later in the summer and will inform the Health Bill to be introduced later in the year.
The key policy changes are as follows:
- The commissioning of NHS services will be placed in the hands of GPs through the disbanding of Primary Care Trusts and Strategic Health Authorities. Along with this, all hospitals will be granted Foundation Trust status, meaning that they will receive a greater level of autonomy from the Department of Health. This is part of the Coalition’s broader drive to devolve power to local communities and empower clinicians. It is also estimated to result in NHS management costs being cut by an estimated 45%.
- Monitor (currently the regulatory body for NHS Foundation Trusts) will receive a strengthened brief – making it the economic regulator for all providers of services.
- An independent NHS board will be created that will oversee GP commissioning and lead on specialised commissioning.
- An ‘any willing provider’ model will be introduced for healthcare, allowing the private sector to bid to provide services as long as standards are met. This is with a view to creating the ‘largest social enterprise sector in the world’.
- An Outcomes Framework (objectives of which to be consulted on this year) will replace the last Parliament’s targets. Again, this is designed to contribute to the cultural shift towards the empowerment of clinicians and the role of Government as reactive not prescriptive in their leadership .
- The PPRS (Pharmaceutical Price Regulation Scheme) will be changed to a system of value based pricing before the present scheme expires (Jan 2014). The Cancer Fund contained in the Conservative Manifesto will operate from April 2011.
- The payment system in the NHS will be reformed so money follows outcomes not procedures.
- Local Authorities will be able to agree local strategies to bring together health care, social care and public health though allowing them control over local health improvement budgets. They will receive ring fenced public health budgets in order to do this.
- Patient access to information will be increased, and patients will be able to choose their GPs and have more control over the care they receive. A new body called ‘Health Watch’ will be created to champion patients and ensure they receive access to care.
- A Public Health White Paper will be published later in the year.
- Executive bodies of the Department of Health (quangos) will be cut by ‘at least one third’ with details to be published ‘later in the year’.
The full document is available online at http://bit.ly/bLGa6i.
The full transcript of Andrew Lansley’s speech is available online at http://bit.ly/9NL7HA.
Links to responses to the White Paper:
NHS Alliance: http://bit.ly/abvKFV.
NHS Confederation: http://bit.ly/dxG8ay.
Kings Fund: http://bit.ly/atiNUK.
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Posted on 2nd July 2010 by info@pnh-alliance.org.uk
On 30 June Lord Crisp (the former Permanent Secretary for Health and the Chief Executive of the NHS), asked a question in the House of Lords regarding health insurance:
30/06 – House of Lords – Oral Question: Health: Private Insurance
Lord Crisp (Crossbench) to ask Her Majesty’s Government what controls they propose to put in place to ensure that private health insurance companies adhere to their industry codes of practice.
Lord Sassoon (Conservative, The Commercial Secretary to the Treasury): My Lords, all private health insurers must comply with Financial Services Authority requirements, including those for treating customers fairly, which would include adherence to industry codes. The Financial Ombudsman Service takes account of all Association of British Insurers codes of practice in determining whether a complaint should be upheld and, if so, what the redress should be.
Lord Crisp: My Lords, I thank the Minister for that reply. Does he agree that it is outrageous that an insurer that says it offers full cancer coverage can stop payment for a cancer drug during treatment in complete defiance of that industry code of practice? Will he ensure that the consumer protection and markets authority, which I believe is being created, will properly cover the selling, and perhaps the mis-selling, of private health insurance?
Lord Sassoon: My Lords, I welcome this Question from the noble Lord, Lord Crisp, and I appreciate the concerns that lie behind it. The process by which industry codes, which are not statutory, are enforced has a number of levels. First, the Association of British Insurers makes it a requirement of membership that codes are adhered to by all its members. Secondly, the Financial Services Authority has a process of confirmation of industry codes that are put in place. To be confirmed, those codes have to meet a series of guidelines as to form and content. The FSA takes account of non-compliance in its regulatory decisions. Furthermore, the ombudsman is required by the FOS rules to take industry guidance into account. Therefore, broadly speaking, if a complaint is brought and the code has not been adhered to, there should be a finding in favour of the complainant. I very much regret the situation that the noble Lord described, but it should be picked up if the processes are properly followed.
The full debate is available online at http://bit.ly/dnzby9.
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June 2010
Posted on 16th June 2010 by info@pnh-alliance.org.uk
The Rt Hon Stephen Dorrell MP has been elected as the Health Select Committee Chair. He made the following statement in response to his appointment:
‘I am delighted and honoured to have been elected by my colleagues to serve as Chair of the Health Select Committee.
The Select Committee has a vital role in scrutinising the performance of the Government and reporting on it to the House and the public. We all know that government spending is going to be more constrained in the years ahead; I believe this makes it doubly important that the Select Committee is able to produce authoritative reports which analyse the impact of government decisions on the patients and staff of the NHS.
I also believe that the Select Committee can play an important role in building cross party support for long term developments in health policy. While there will always be political controversy about individual decisions, I believe the Select Committee can play a key role in building on the broad consensus about objectives which exists within and beyond the House of Commons.
At the heart of the debate about the future of public services is the familiar, but increasingly challenging, requirement to reconcile public aspirations with available resources.
There is no bigger issue facing our society.’
On 10 June the Rt Hon Stephen Dorrell MP was elected as the Health Select Committee Chair.
He made the following statement in response to his appointment:
‘I am delighted and honoured to have been elected by my colleagues to serve as Chair of the Health Select Committee. The Select Committee has a vital role in scrutinising the performance of the Government and reporting on it to the House and the public. We all know that government spending is going to be more constrained in the years ahead; I believe this makes it doubly important that the Select Committee is able to produce authoritative reports which analyse the impact of government decisions on the patients and staff of the NHS. I also believe that the Select Committee can play an important role in building cross party support for long term developments in health policy. While there will always be political controversy about individual decisions, I believe the Select Committee can play a key role in building on the broad consensus about objectives which exists within and beyond the House of Commons. At the heart of the debate about the future of public services is the familiar, but increasingly challenging, requirement to reconcile public aspirations with available resources. There is no bigger issue facing our society.’
For further information on the results of select committee elections visit the Parliament website.
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Posted on 16th June 2010 by info@pnh-alliance.org.uk
On 8 June Andrew Lansley made his first speech as Secretary of State for Health at Bromley by Bow Health Centre. The Health Secretary challenged the NHS to:
• make a cultural shift. From a culture responsive mainly to orders from the top-down, to one responsive to patients, in which patient safety is put first.
• devolve power through the unleashing of meaningful information to patients. Comparative data about standards and patient experience will drive up standards, as the data will influence patient choice. A transparent NHS is a safer NHS.
• engage people in their care so that, “no decision is made about me, without me”, and give patients the opportunity to provide feedback in real time, reflecting the experience of their care.
• embrace leadership by setting NHS professionals free from a target-centred and bureaucratic system that compromises patient care, to one focussed on the quality, innovation, productivity and safety required to improve patient outcomes.
• adopt a holistic approach by looking at the entire patient pathway from preventative health and well-being measures, through to hospital and community care.
• align payments in the NHS to drive up the quality of care that patients receive. In the first instance, through introducing payments which encapsulate a more integrated care pathway by giving hospitals responsibility for a patient’s care for 30 days after they are discharged.
On 8 June Andrew Lansley made his first speech as Secretary of State for Health at Bromley by Bow Health Centre. The Health Secretary challenged the NHS to:
- make a cultural shift. From a culture responsive mainly to orders from the top-down, to one responsive to patients, in which patient safety is put first.
- devolve power through the unleashing of meaningful information to patients. Comparative data about standards and patient experience will drive up standards, as the data will influence patient choice. A transparent NHS is a safer NHS.
- engage people in their care so that, “no decision is made about me, without me”, and give patients the opportunity to provide feedback in real time, reflecting the experience of their care.
- embrace leadership by setting NHS professionals free from a target-centred and bureaucratic system that compromises patient care, to one focussed on the quality, innovation, productivity and safety required to improve patient outcomes.
- adopt a holistic approach by looking at the entire patient pathway from preventative health and well-being measures, through to hospital and community care.
- align payments in the NHS to drive up the quality of care that patients receive. In the first instance, through introducing payments which encapsulate a more integrated care pathway by giving hospitals responsibility for a patient’s care for 30 days after they are discharged.
For a full transcript of the speech visit the Department of Health website.
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Posted on 16th June 2010 by info@pnh-alliance.org.uk
On 2 June Andrew Lansley made his opening speech in Parliament as Secretary of State for Health. He stated the need to change from a ‘command-and-control, top down system’ to ‘one that is built on standards of delivering quality’. He also spoke about the McKinsey Report that was published on the same day – a report stating that ‘on average, something like 10% of those employed by a provider of health care with 300 staff should be taken away, mostly clinical staff’. This report was not made public by the previous administration.
For a full transcript of the speech visit the Parliament website.
To download the McKinsey Report visit the Department of Health website.
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Posted on 16th June 2010 by info@pnh-alliance.org.uk
An unprecedented number of participants attended the largest ever European Conference on Rare Diseases (ECRD), which was held in Krakow, Poland on May 14 & 15, 2010.
Over 600 participants from 43 countries, a third of which came from Eastern Europe, gathered to discuss key policies and actions to improve the lives of those affected by these conditions.
An unprecedented number of participants attended the largest ever European Conference on Rare Diseases (ECRD), which was held in Krakow, Poland on May 14 & 15, 2010.
Over 600 participants from 43 countries, a third of which came from Eastern Europe, gathered to discuss key policies and actions to improve the lives of those affected by these conditions.
For further information visit the Eurordis website.
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May 2010
Posted on 13th May 2010 by info@pnh-alliance.org.uk
Following the formation of a coalition government between the Conservatives and the Liberal Democrats, Andrew Lansley MP has been appointed the Secretary of State for Health. Mr Lansley previously held the health portfolio in opposition and has been an MP for South Cambridgeshire since 1997.
Born in Hornchurch in 1956 he is the son of a distinguished medical scientist. He started his career as a civil servant at the Department of Trade and Industry, becoming private secretary to Norman Tebbit in 1984 and was later policy director and deputy director-general for the British Chambers of Commerce.
He is patron of several organisations including ASPIRE the Spinal injury charity, Stroke and Action for Dysphasic Adults, and Headway the Acquired Brain injury group.
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April 2010
Posted on 26th April 2010 by info@pnh-alliance.org.uk
Alec Shelbrooke, the Conservative Prospective Parliamentary Candidate for Elmet and Rothwell, and Ryan Stephenson, the Conservative Prospective Councillor for Garforth and Swillington visited the specialist PNH service at Leeds Teaching Hospital on Wednesday 31st March 2010.
The two Leeds-based candidates were introduced to Professor Hillmen, a internationally recognized PNH expert, and Louise Arnold, a PNH clinical nurse specialist, of the PNH Alliance, as well as other clinical and administrative members of staff in the PNH service. Professor Hillmen gave an introductory presentation on PNH, the role of the service, and the service’s national commissioning arrangements, which was followed by a question and answer session.
Following the presentation, Mr Shelbrooke and Mr Stephenson were walked around the service and introduced to three patients and their families who described their experiences of PNH and the treatment provided by the service. The patients talked very positively about their treatment, and drew favourable comparisons between their current health and their health prior to being referred to the service. Mr Shelbrooke and Mr Stephenson enquired about the patients’ views of the service, how their health has changed since being referred to the service, and their relationships with their consultants.
The visit then concluded with a tour of the screening laboratory and a discussion of the patient pathway from diagnosis to treatment with Professor Hillman and his colleagues.
All participants agreed that the tour was a success and it is hoped that further such visits can take place in the future.
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Posted on 1st April 2010 by info@pnh-alliance.org.uk
Responding to the publication of the Health Select Committee’s Report on Commissioning, Professor Ian Gilmore, president of the Royal College of Physicians said today:
“MPs today have delivered a stinging rebuttal to the way health services are presently commissioned in this country. Not only is there often insufficient clinical input, but high staff turnover and a lack of relevant data means that many commissioners are not in place long enough to add value to the complicated process of setting up services that meet a community’s health needs.
Like the Select Committee, our Members and Fellows are also alarmed by the spiralling administrative costs associated with this edifice at a time when front line services and posts are under threat. If the Government is committed to the present formula we need at least to make sure that the wider package of reforms of the last ten years doesn’t, as it does now, militate against the laudable aim of delivering high quality care for patients and value for taxpayers.”
The Health Select Committee report into Commissioning included a section on commissioning for rare diseases like PNH.
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