An All Party Parliamentary Group (APPG) is a group of MPs and peers from across the party spectrum who come together to look at specific issues of interest. There are many of these groups including one on France, one on light railways, and even one on cheese!
The aim of the APPG for Patient and Public Involvement in Health and Social Care is to ensure that patients are at the heart of modernisation and reform of the NHS and that healthcare services truly reflect the needs of the people who use them. The APPG brings together interested Parliamentarians to lobby central Government, to provide mechanisms through which patients and the public in general can comment, query, scrutinise and effect change in healthcare policy nationwide as well as at a local level. This work represents a golden opportunity to bring the voice of patients right into the heart of Parliament; for MPs and peers to listen to what patients have to say. The APPG will meet 3-4 times per year.
The new APPG for Patient and Public Involvement in Health and Social Care was firmly established this year in its inaugural meeting on 19 January 2011. At that meeting, Dr John Pugh, MP for Southport, was elected Chair and Baroness Masham, who is also a Vice-President for the Patients Association, was elected Vice-Chair. We currently have over 25 members from both Houses of Parliament and from all parties showing the importance of this issue to all parties.
This meeting was not only about terms of reference and election of officers, we got straight into scrutinising the Coalition Government’s policies on patient involvement, specifically HealthWatch and the reform of patient engagement at a local authority level. This has been a contentious subject and we were fortunate enough to be able to invite two high level speakers. Paul Streets, who is Head of Patient Engagement at the Department of Health, and Frances Hasler who is the Head of Development for HealthWatch spoke to the group about how HealthWatch will be developed and the role it will play for patients. The members of the APPG shared our concerns about the independence and effectiveness of local and national HealthWatch and were able to put their questions directly to Paul Streets and Frances Hasler.
Our second meeting was in May 2011 where we built on our initial dicussions back in January around HealthWatch. At this meeting we were joined by the Government Minister responsible for HealthWatch, Earl Howe, who is the Parliamentary Undersecretary of State for Quality.
Speaking during the meeting, several Parliamentarian members expressed their concerns about various aspects of how Healthwatch would work including how it would be funded and how it could be independent and transparent if it is to sit within the Care Quality Commission, the Government regulator.
Earl Howe, was kind enough to answer questions from MPs, peers and from representatives of the Patients Association and other charities. We challenged him on the membership of Healthwatch and its remit. By engaging directly with Parliament and Ministers, the Patients Association hope to be able to make a significant impact on the reforms.
We continued to work closely with the Chair, Dr John Pugh, to look at future topics for discussion at the APPG, that resonate with Parliamentarians.
In December 2011 the APPG met to discuss the issue of treatment restrictions or what are called “Procedures of Limited Clinical Value”.
“Procedures of Limited Clinical Value” is a term NHS managers have applied to a range of elective surgical procedures that they no longer wish to fund. Procedures defined in this way have normally been complimentary or alternative treatments, aesthetic treatments, or treatments without NICE approval.
However, the list of procedures has been extended because of the current financial restrictions, and many proven operations known to enhance health and improve the quality of life have been included this category.
Each Trust decides itself what procedures are placed on these lists, so there is not definitive list.
However, most lists now include the following:
• Knee operations
• Hip replacements
• Cataract operations
• Hernia Operations
• Cochlear implants
• Bariatric (weight loss) surgery
The meeting of the APPG was attended by MPs, peers, surgeons and representatives from other charities to discuss the issue of “procedures of limited clinical value” and the effect that they have on patients.
Speakers at the meeting included Professor Antony Narula, a Consultant Ear, Nose and Throat surgeon who is a member of the Council of the Royal College of Surgeons and Sue Woodward, Chair of the Royal College of Surgeons’ Patient Liaison Group.
During the meeting we also played interviews from patients affected by long waits for procedures such as hip replacements and hernia operations who contacted us through our Helpline. They were able to give their first hand accounts of how waiting for so long for an operation affected their quality of life. These were very powerful accounts and made a great impact on those present reminding them that it is real people who are being affected by these changes.
Professor Narula spoke about the effects of procedures of limited clinical value from a surgical perspective saying that as well as causing pain and distress to patients, they often result in greater complications further down the line which ultimately cost more than if the problem were tackled sooner. He also spoke about the bureaucracy that came along with “procedures of limited clinical value” saying that the paperwork that surgeons and GPs were required to fill in meant wasted time which could be better spent treating patients.
Sue Woodward gave further insight on the effects “procedures of limited clinical value” can have from a patient’s perspective focusing on three key areas: Trust in healthcare professionals; quality of life; and financial implications on the wider NHS. Trust, she said, is very important and patients want to know that they are getting the right procedures at the right time. Long waits can have a detrimental effect on that trust. Waiting for operations can have a terrible effect on patients’ quality of life and their ability lead as normal a life as possible. She also noted that health systems are inherently complex and problems do not go away, they build up often meaning more complications and therefore more costs further down the line.
The group then discussed the issue of “procedures of limited clinical value” and in particular the restrictions they place on GPs who are trying to refer they patients to specialists. They also discussed the referral management system which decided whether a patient’s condition is serious enough for them to be referred to a specialist. Many GPs and surgeons have become increasingly frustrated by this system which does not take their professional judgement into account and which does not always allow them to send patients for treatments that they believe are clinically necessary. Instead patients are not told the reasons why they are not being sent for further treatment leading to growing distrust of medical professionals. Alongside this, they discussed the cost implications of forcing patients to wait for longer with the greater risk of complications it brings. For patients, the lack of information about why they are not being given access to treatment and the terrible effect this can have on their quality of life remain vitally important and these issues must not get lost in discussions about the wider financial implications.
Following on from this meeting, we are hoping to continue working with the Royal College of Surgeons to highlight the issue of these restrictions on treatment which is becoming ever more pressing as the financial climate worsens. We will keep you updated on how this progresses.
In our first meeting of 2012, the APPG renewed is registration by relecting Dr John Pugh MP as the Chair and Baroness Sue Masham as Vice Chair. We are also pleased to announce that Huw Irranca-Davies, MP for Ogmore, was elected as Co-Chair of the APPG.
NHS Constitution Inquiry
An inquiry looking at the evolution and current utilisation of the NHS Constitution throughout the National Health Service, based on the written and oral evidence collected as part of four sessions organised by the Patients Association and chairs by the All Party Parliamentary Group on Patient and Public Involvement in Health and Social Care.
The Patients Association provided evidence to a committee of MPs and peers on the NHS Constitution.
- The NHS Constitution is a declaratory document which describes pre-existing legal rights for patients who use the NHS.
- It also contains pledges from the NHS. These are not legally binding. However, all NHS bodies are legally obliged to have regard for the NHS Constitution in all decisions.
- The Secretary of State for Health must review and publish an updated version of the NHS Constitution every 10 years and publish an updated version of an accompanying handbook to the NHS Constitution every 3 years.
- The NHS Constitution only applies to the NHS in England and does not affect patients or services in Northern Ireland, Wales or Scotland.
- Clinical Commissioning Groups and NHS England have a duty under the Health and Social Care Act 2012 to promote the NHS Constitution
Oral Sessions were held within the Houses of Parliament. After an extensive investigation into the NHS Constitution, we have devised a five-step programme for improving how the NHS Constitution is both understood and implemented across the United Kingdom.
The five steps we proposed are:
1. Expanding the NHS Constitution
2. Updating the NHS Constitution
3. Focussing the NHS Constitution
4. Promoting the NHS Constitution
5. Better engaging and involving NHS Staff
The Patients Association has provided evidence to a committee of MPs and peers on the controversial Care.data programme.
Care.data is a major new IT programme which will enable information on GP records to be shared with the Health and Social Care Information Centre (HSCIC). This scheme, which was originally scheduled to be rolled out in the spring of 2014, is intended to help the NHS plan and improve patient care.
The Patients Association, along with the National AIDS Trust, The National Council for Palliative Care, the Alzheimer’s Society and Macmillan Cancer Support, provided evidence to the APPG chaired by John Pugh MP.
Many aspects of the Care.data programme were explored and each organisation provided valuable insights into how this controversial scheme affects its members. There was concern from all charities regarding the lack of publicity, clarity and patient involvement in the Care.data programme.
All charities agreed that the collection and analysis of medical data would be beneficial to help tackle illnesses and improve the lives of patients. Linked to this was discussion on the issues surrounding opting in/opting out of the scheme. The organisations broadly agreed that as long as patients are properly informed, an opt-out policy was in the best interests of wider society.
Summary of the Patients Association evidence:
- The Patients Association agrees in principle that data sharing will improve patient care, but we are not convinced that a strong case has been made to ensure that the interests of the patients will be adequately protected. We suggest that with regards to data sharing arrangement, no blanket policy can be adopted and each case must be judged on its merit.
- We welcome the news that the Care.data programme has been postponed until autumn and proposals are being put in place to pilot the initiative with a selection of GP surgeries.
- We also suggest that GP surgeries are actively involved in making the ‘opt-in/opt-out’ process simpler and less burdensome for patients.
- We also recommend that GP surgeries ensure that patient records are accurate and that clear procedures are in place to inform patients which parts of their records are being shared and with whom.
- Finally, we strongly urge the government to ensure that there are robust safeguards in the IT systems to prevent any unauthorized parties accessing patient data either inadvertently or deliberately which may put patents at risk.