Select Committee on Health Written Evidence

10. Evidence submitted by Breakthrough Breast Cancer (PPI 42)


  1.1  Breakthrough Breast Cancer is the UK's leading breast cancer charity and is committed to fighting breast cancer through research and education. Breakthrough has established the UK's first dedicated breast cancer research centre, in order to obtain our vision: a future free from the fear of breast cancer. Breakthrough campaigns for policies that support breast cancer research and improved services, as well as promoting breast cancer education and awareness amongst the general public, policy makers, health professionals and the media.

  1.2  Our memorandum reflects the views of Breakthrough and members of its Campaigns & Advocacy Network (Breakthrough CAN)—which is made up of 657 individuals and 97 organisations. Many members of Breakthrough CAN have personal experience of breast cancer as well as being involved in and working alongside their local NHS to try to deliver better treatments and services for people affected by breast cancer and their families.

  1.3  Breakthrough welcomes the Health Committee's inquiry into Patient and Public Involvement in the NHS. Breakthrough believes that in order to ensure a truly patient-led service, it is essential that the systems and structures are robust and meaningful so that the patient voice is heard at all levels of planning, commissioning, delivery and evaluation of health and social care.

  1.4  Breakthrough welcomes the Government's commitment to establish an effective Public and Patient Involvement in health system. This policy and practice should be one of the key vehicles the Government uses to make its vision of a patient-centred NHS a reality. Breakthrough staff and CAN members would be willing to provide oral evidence to this inquiry, if the committee would find this useful.

2.   What is the purpose of patient and public involvement?

  2.1  Breakthrough Breast Cancer believes the purpose of patient and public involvement is to enable the patient and publics to help shape local healthcare services so that they truly reflect the needs of the population they serve. It is important that patient and public involvement structures do not simply become another means by which a complaint about local services can be raised.

  2.2  It is important to get both patients and the public involved as they may have different health priorities, all of which should inform the design of local healthcare services.

  2.3  It is very important that patients and the public have a stronger voice at a national as well as a local level and the Government should ensure that the National Voices project considers carefully how best to harness the expertise of any new, local initiatives designed to involve patients and the public.

3.   What form of patient and public involvement is desirable, practical and offers good value for money?

  3.1  Breakthrough Breast Cancer would like to see forms of Patient and Public Involvement that are well planned, structured, staffed and resourced.

  3.2  Some Breakthrough CAN members involved in Patient and Public Involvement Forums have told us that the protocol and bureaucracy involved in moving their work plans forward left them feeling disillusioned and frustrated:

    "I wanted to provide some information to the South West Breast Screening Quality Assurance Reference Centre from our Patient and Public Involvement Forum on our headed notepaper and found the procedure of meetings and committees involved in getting a simple information request approved very frustrating."

    Quote from Breakthrough CAN member, Cornwall

  3.3  Patient and public involvement should be part of a simple and streamlined decision-making and change-effecting process.

  3.4  The constant change and reform of patient and public involvement in health structures has also left many of those involved feeling disillusioned and frustrated. It is now important for the Government to put in place a system that is effective and given time to "bed down".

  3.5  Patient and public involvement systems and structures should enable patients, the public, health care professionals and other stakeholders to formulate a shared agenda to improve patient services.

  3.6  One example of how Patient and Public Involvement can directly lead to tangible improvements in service delivery is Breakthrough's Service Pledge. This project, initially piloted in 2003 and now involving 10 breast units throughout England and Wales, enables staff and patients to work in partnership towards a patient-centred breast service. Beginning with patient questionnaires and patient interviews carried out by trained members of Breakthrough CAN, the Service Pledge asks patients to speak up about what matters most to them. This often differs to what staff may assume is a patient priority. For instance, patients may simply want seating to enable them to chat to one another in the waiting room.

  3.7  Examples of improvement goals to date include a photographic guide to surgery results, a waiting-times board that communicates to patients the cause of delays and a community drop-in service for patients in a rural area.

  3.8  The end product of the project is a Service Pledge leaflet, produced by each breast unit taking part, which publicises to all patients the existing service available and also a minimum of three patient-led improvement goals. A generic Service Pledge is enclosed.

4.   How should LINks be designed?

  4.1  As well as providing opportunity for those already involved in Patient and Public Involvement, it is important to attract a wide diversity of people to get involved in the new LINks. This will require new and innovative ways to get people involved so that the membership of LINks truly reflects the make-up of the population they will serve.

  4.2  There should be a clear means by which the new LINks are able to access the views of patients and the public, as well as a means by which matters can be raised with the new LINks. Where LINks wish to involve an adviser for a particular review ie of breast cancer services, they should be encouraged to contact patient advocacy groups such as Breakthrough CAN.

  4.3  It is important to remember that those involved in patient and public involvement are usually volunteers who often have busy lives. The new networks should be made flexible enough for people to get involved as much or as little as they would like depending on their circumstances.

  4.4  Through supporting and training members to become patient advocates in their own right, Breakthrough CAN aims to increase the influence of patients and the public in decisions regarding all breast cancer and wider health issues. Similarly, members of the new LINks, especially those with language, learning or transport difficulties, should be provided with adequate training and resources to support their role.

  4.5  It is important that LINks work closely with local authorities to help shape healthcare provision for the local community. This relationship should be characterised by transparency and accountability.

  4.6  LINks should be mindful of their need to focus on less obvious issues that affect patients, like access to complementary therapies, welfare benefits, costs of travel for patients and the promotion of local NHS services.

5.   Wider public consultation and Section 11 of the Health & Social Care Act

  5.1  Breakthrough welcomes the opportunity for local people to be engaged in discussions around the changes to local NHS services.

  5.2  A number of Breakthrough CAN members have told us that NHS Trusts are failing to engage with local people about changes to local NHS services. They have told us that their Trusts are not pro-actively telling the public about proposed changes and seeking their views.

    "I feel strongly that the Royal Cornwall Hospital Trust did not fully engage in a proper consultation process with regards to the recent and ongoing reconfiguration of local services. The local Patient and Public Involvement Forum served a Section 11 notice on the Trust as well as the Local Authority Overview and Scrutiny Committee but it was not acted upon and no formal explanation as to why not was provided."

Quote from Breakthrough CAN member, Cornwall, who felt that by the time consultation was introduced the real decisions had already been taken[6].

    "I feel strongly that the consultation on the Bristol Health Services Plan, with implications for local breast care services, was carried out without any real effort to engage with local people. Only six people commented on the proposals for breast care services. Test Research, part of Mori, did a telephone survey of 654 adults in Nov 2004 and discovered that only 20% were aware of proposals for breast services." [7]

Quote from Breakthrough CAN member, Bristol.


  6.1  The Department of Health should commit to maintaining a workable system for patient and public involvement in the long term rather than the short term. There is a real danger of patients and the public losing enthusiasm for the principle of user involvement if the systems are constantly changed and poorly communicated. Patients Forums were in existence for only three years before it was decided that they needed to be changed. Such changes may be necessary for the long term future of patient and public involvement but can be unsettling for staff and volunteers involved in the system and many Breakthrough CAN members feel that the new changes need to be given due time to "bed down".

  6.2  The Department of Health should review the current roles and responsibilities of stakeholders including the Healthcare Commission, Local Authority Overview and Scrutiny Committees, Independent Complaints Advisory Service, the new NHS Centre for Involvement and Foundation, Trust boards and members councils as well as all NHS Trusts in light of the proposed new LINks. This is necessary in order to clearly define their roles and responsibilities, and their relationship to each other.

  6.3  It is important that the Department of Health considers how the role of the new LINks will develop alongside other existing and proposed initiatives designed to involve users and share best practice where applicable. Cancer Network Partnership Groups, Patient Advice and Liaison Services, peer review, community petitions, patient choice, the National Voices project and the new NHS Centre for Involvement are all examples of where LINks could and should have strong working relationships to avoid duplication, co-ordinate work and identify where they can add value to each other. It is also important that the work of LINks is joined-up with broader Government initiatives where they could add value, like the Government drive for Third Sector involvement in public services.

  6.4  Breakthrough Breast Cancer welcomes the Government's efforts to empower Local Authority Overview and Scrutiny Committees but in addition, every effort must be made to ensure that those committees are working effectively with local NHS Trusts and the new LINks to shape and deliver improved healthcare locally. Some Breakthrough CAN members have raised concerns that Overview and Scrutiny Committees do not currently operate as an effective check and balance on NHS Trusts because the Committees are perceived as not being independent from NHS Trusts.

  6.5  Breakthrough CAN members have told us that the effectiveness of Patient and Public Involvement Forums varies across the country. Breakthrough recognises efforts to ensure that the new LINks are flexible but recommends that basic expectations and core standards of engagement should be established to ensure a level of consistency across the country.

  6.6  There should be an annual evaluation of LINks and any common themes in terms of the patient experience should demonstrably feed into new Department of Health initiatives to improve the experience of patients. This evaluation could be incorporated into the Healthcare Commission's Annual Health Check, although it is important that the Healthcare Commission seeks concrete examples of meaningful engagement with LINks from Trusts, rather than asking them simply to tick boxes to confirm that they have consulted with them.

  6.7  The Department of Health should consider reviewing how Section 11 has worked in practice, by approaching NHS Trusts, patients and the public that have been involved, as well as the Healthcare Commission. The wording used in Section 11, "substantive change to patient care", needs clarification. The Department of Health might wish to consider issuing guidance supporting the operation of Section 11 in practice and good practice examples of Trusts that have actively engaged with the public[8] should be shared. Thought should also be given as to how the new LINks will fit into ensuring that Section 11 works effectively.

Vicki Nash

Breakthrough Breast Cancer

8 January 2007

6   The Department of Health publication Keeping the NHS Local: A new direction of travel, specifies that options for change must be developed "with people, not for them" right from the outset, "before minds are made up". Back

7   As stated previously, Breakthrough CAN members would be willing to provide oral evidence to this inquiry, if the committee would find this useful. Back

8   For example, Liverpool PCT's Big Health debate. Back

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