Health and Social Care Bill

Memorandum submitted by the Patients Association (HS 39)

The Patients Association (PA) was founded in 1963. We are an independent national charity operating in the UK, which highlights the concerns and needs of patients. Through our Helpline, correspondence and research we learn from patients the key issues that are of concern and work towards improving the healthcare we all receive. Our work includes:-

• Campaigns to support Patients’ Rights

• Lobbying Government to address healthcare issues affecting patients

• Speaking out for patients and carers

• Providing information and support to help patients

The PA accepts the intention of the Governments Health and Social Care Bill is to put the patient at the heart of the NHS and we support the overall principles of a NHS that is led by clinicians with patients at the centre. We welcome initiatives that result in a truly patient centred system of healthcare. We welcome a reduction in bureaucracy if this frees up funding to be reinvested into frontline services. We welcome a focus on patient involvement in services, if this is truly representative of ALL patients.

However, our concerns with the current Bill is that it represents a huge restructure of the NHS that needs to be delivered against a backdrop of £20 billion savings - to be achieved by the NHS by 2014. Not only do we believe this is a near impossible ask of the NHS but it is in danger of having a detrimental effect on patient care and frontline services.

The PA has identified the following main opportunities and concerns regarding the Health and Social Care Bill:

1. Role of Secretary of State (SoS) for Health

· For the first time, the SoS will publish an annual report regarding the performance of the NHS in England to be laid before Parliament. It may include an assessment on how well the NHS is doing against the outcomes set in the Outcomes Framework. We believe this should be mandatory and not optional.

2. NHS Commissioning Board

· The proposed NHS Commissioning Board will be made up of a chair plus 5 members appointed by the SoS and then the CEO and other member.

· There are no details regarding the experience of the individuals who should make up this Board. We believe the Board has to include a patient representative/charity representative who can represent the views of the patient.

· Duties of the Board will include ‘to reduce inequalities and promote patient involvement’. Given this remit, it is therefore essential that a patient representative has a duty to sit on the Board.

· Commissioning guidelines will be developed based on the quality standards developed with advice from NICE. However, the quality standards are in their infancy – there only 4 published to date [1] - and there is a lack of robust evidence to support the role out of these standards for use as a basis for local commissioning guidance.

· There are also proposals for the Board to host some commissioning networks in agreement with GP consortia, suggested at this stage to be cancer, targeted health services for ill and disabled children, and coronary heart disease. However, there is a lack of clarity as to how it will be determined as to which services will be commissioned nationally and which will fall to GP consortia. If a particularly successful or ambitious consortia wishes to undertake the commissioning of a specific service in their region but other local consortia wish this to fall to the Board, how will this be resolved. The lack of clarity around what services are defined as regional is a concern – this is a really grey area that could mean services fall by the wayside or are poorly commissioned.

3. GP commissioning

Patient-doctor relationship

· Patients – who have contacted us through our Helpline, via our Ambassadors network and through a survey we conducted about the White Paper - are concerned that they are going to be referred to services that are most cost-effective as oppose to services that offer the most clinically effective treatment. There is a real danger that the GP and patient relationship will be damaged as a result of this perception.


· GPs are generalists and we question whether they have the expertise to commission for highly specialist services. Clear pathways and guidance will need to be defined. How can GPs commission services when they may only see 2-3 patients a year with a rare condition?

· An example is pain services – every year, over 5 million people in the United Kingdom develop chronic pain, and of that number only two thirds will recover. [2] Our recent report highlighted that there was not a clear pathway in the NHS for pain services [3] . Without this clearly defined it will make it very difficult for GPs to commission this service

Patient engagement

· We welcome that the consortia have a duty to reduce inequalities and promote patient involvement and enable patients to make choices [4] but this needs further detail - promoting patient involvement could mean simply displaying a comments box at the reception of a GP surgery. There needs to be prescriptive guidelines in place as to how this will be achieved. The Patients Association has contacted all of the initial 52 Pathfinder consortia to ask if they have a Patient and Public Involvement Strategy in place. Preliminary results suggest that out of the 12 consortia that have responded so far, only 5 have a PPI strategy in place. The Patients Association would be happy to share the more detailed findings with the committee.

· The White Paper suggests that patient participation can be achieved by using Patient Participation Groups (PPG) at individual GP practices. However, a recent survey suggests that only 37% of English practices have a PPG and that this is likely to be an over-estimate as practices with a PPG are more likely to respond to the survey. [5] How can it be expected that consortia will engage with patients if there are no prescriptive guidelines and if the current mechanisms for engagement are not being taken up by 63% of GP practices?

· Patients with long term conditions and those with complex conditions (i.e. the elderly and those with learning disabilities) are often the heaviest users of the NHS. It is essential that the voices of these patient groups – who are often the hardest to reach groups - are heard by consortia.

Local variability

· Consortium will form based on geographical areas to allow them to jointly commission services with LAs. However, patients may register with a GP practice but live outside the area so how will consortium meet the needs of those patients [6]

· Decisions on what services and treatments to buy will be made by individual consortium which raises the possibility of increasing variability – one consortium may provide treatment X whereas the one down the road may not. This could lead to patients moving practices to ensure they are within a consortium that provides the treatment/service that they want. Furthermore, patients may be unable to exercise this level of choice and move practices i.e. due to mobility issues or being based in a location where this is no other choice of GP consortia

Service structure

· There is a lack of clarity as to what will happen to out of hours services once PCTs are abolished - will this go back to GPs? Moving out of hours services to PCTs created much confusion for patients and moving this back to GPs has the potential to further increase this.

· A GP practice may enter into a commissioning arrangement with a local hospital for the provision of specific services, but under the ‘Choose and Book’ system, a patient may wish to be treated elsewhere. There is a lack of clarity as to how these then opposing priorities of the GP as ‘commissioner’ and the patient as ‘chooser’ will be reconciled. Details are required on how this potential conflict of interest will be addressed – it seems to go against the initiative from the Government on ‘patient choice’.

· We have heard from our Helpline - from patients and NHS staff - that they are concerned that elective surgical procedures such as hernia surgery and tonsillectomies are being withdrawn from patients, due to cost. This obviously has a huge impact on patients’ health but also we are concerned as to what this means when GPs are commissioning these services.

· Consortia will have powers to raise additional income and may also be given a bonus in respect of good performance but there is very little detail as to how this will be carried out. [7] We are concerned that GPs will be focused on income generation rather than patient care

4. Any willing provider

· Monitor will set prices that are to be used for the payment of health services – there will be a maximum price but flexibility to negotiate below that price. There only needs to be a minimum of 2 applicants per consortium [8] and there will be no limitations on the size of consortia. But how will smaller consortium compare with large consortium? In a competitive market, smaller consortia will be unable to negotiate provider contracts to the same extent as larger consortia - this may have a detrimental effect on patient services

· There is also a lack of details around the issue of competition [9] and the promotion of competition. [10] Standards of services, treatments, patient safety and levels of care should drive the commissioning of services and not whichever provider offers the lowers price

· There are no details on how standards of care and outcomes will be used when making decisions on which provider to use, without this clearly outlined standards of patient care may suffer

· The NHS is funded by tax payers’ money and it should not be used for profiteering which not only runs against the principles of the NHS but also the emphasis on competition takes away the focus from patient care. Healthcare professionals should be focused on working together to provide the best care for patients and should not be competing with each other in the manner of small business.

· With a move to "any willing provider" there is a real concern that private organisations will cherry pick profitable slices of NHS services – private companies are not going to tender for services that do not have the potential to make a profit. The danger with this is that existing NHS services will be left with reduced budgets, and may be forced to close.

· Promoting competition may mean that consortia purchase services from private providers and not the local hospital. This is of concern as if a hospital loses the tender for a specific service it may have a knock on effect to other areas of care within the hospital. Hospital services do not operate in silos.

· Despite the emphasis on shared decision making, there is a real possibility that the option of ‘no treatment’ may be selected over treatments such as surgery due to costs and despite the patient’s wishes. This of particular concern for the elective surgical procedures that have already been identified as being cut.

· The move of all Acute Trusts to Foundation Trusts is a huge concern. Foundation Trusts operate as small businesses and it is in their interest to attract as many patients as possible. There is a danger that this approach will result in hospitals no longer providing services to the local community but instead trying to attract patients from outside the area to generate as much profit as possible.

· We welcome the increased level of accountability that will be given to governors and directors of Foundation Trusts. [11] There is an explicit duty for governors to hold the board of directors to account and the duty of directors to promote the success of the organisation (similar to the duty imposed on company directors under company law)

· There would no longer be a borrowing code or borrowing limits for Foundation Trusts. The SoS would no longer give financial assistance to Foundation Trusts but would make loans. This is a huge concern, we could end up in a situation where Foundation Trusts are in huge amounts of debts and are unable to provide services due to having to make budget cuts to pay back loans.

· There is no longer a cap on the amount of income a Foundation Trust can earn from private charges otherwise known as the ‘private patient income cap’ [12] . This is alarming – with all Trusts becoming Foundation Trusts by 2013/14 and being under increasing financial pressures, are they going to prioritise fee paying patients over the general public and stop serving the needs of their community?

5. Patient Involvement

· The Bill will place a duty on the Board and GP consortia to promote the involvement of patients and their carers and to enable patients to make choices about their healthcare [13]

· Although the Board will have a duty to issue guidance on commissioning to GP consortia, it only state that this ‘could include guidance about how to fulfil their duties in relation to public and patient involvement’. So as it currently stands the Board does not have to advise consortia on how to go about Patient and Public Involvement. As stated previously, our preliminary research suggests that there is variation regarding the number of GP consortia that have a patient engagement strategy in place. GPs need clear guidance from the Board regarding how to involve patients at their consortia.

· We welcome legislation changes that will strengthen the arrangements for the Ombudsman to share more widely investigation reports and complaints information [14]

6. Healthwatch

Local Healthwatch will cover the area of the local authority. [15] This is of concern as some consortia will cross local authority boundaries so how is it decided which Local Healthwatch scrutinizes them?

· Of particular note in the Bill is that each local authority must make "arrangements as it considers appropriate for the provision of assistance to individuals in connection with complaints". This is of great concern as ‘considers appropriate’ will be interpreted differently by local authorities – support could be withdrawn after a matter of months even though we hear of complaints that can take years to get through the system [16]

· Mental health advocacy would not be a part of the NHS complaints advocacy services that Las will be able to commission from Healthwatch. Who will do mental health advocacy? There are no details on who will fulfill this function.

· Local authorities will be responsible for the performance of Local Healthwatch as the commissioners of this service. It will be the local authority’s responsibility to performance manage Local Healthwatch. There will be no nationally driven performance management of Local Healthwatch. How will consistent standards between Local Healthwatch be monitored?

· Funding for Local Healthwatch will NOT be ring fenced [17]  this is of real concern as with constraints on local authority budgets the funding could be directed elsewhere.

· There is no advertising budget for Healthwatch. The majority of people have never heard of LINks – with no budget for advertising Local Healthwatch how will they be signposted to this?

· We are aware that LINks are not subject to Freedom of Information (FOI) requests and we understand that this will also be the case with Local Healthwatch. However, we believe that as Local Healthwatch will be commissioned by local authorities and therefore be spending public money it should be accountable to the public for the way in which it has dispersed funds. The Bill has a focus on transparency but the inability to FOI Local Healthwatch runs counter to this principle.

· There will need to be consistent branding between the Local Healthwatch organisations which will also need to comply with Healthwatch England. Also, how will local authorities signpost patients to Local Healthwatch and, if Local Healthwatch is not carrying out the advocacy function, there will need to be clear signposting to the organization that is

· We are concerned that there is an expectation there will be a free transfer from personnel in LINks to local HealthWatch. But we hear from patients phoning our Helpline that the local LINks are not working and that the service they are providing is substandard. A free transfer of personnel is therefore not welcomed by the Patients Association. This is supported by a study from the Picker Institute and Kings Fund that suggests that in the main, LINKs have struggled to have any impact on patient involvement in general practice [18] .

7. Integration of services

· For patients with complex needs and those with long-term conditions there needs to be real joined up planning between health and social care. Moving health care and social care to fall under the remit of local authorities has potential to do this but we are concerned that Local Authorities do not have the expertise or capacity to manage the local health budget and also that there is a real danger that health services may fall foul of local budgetary cuts

· All upper-tier local authority will establish a Health and Wellbeing Board and this will need to consist of

o one councillor of the local authority,

o the director of adult social services for the local authority

o the director of children’s services for the local authority

o the director of public health for the local authority

o a representative of the Local Healthwatch Organisation

o a representative of each relevant commissioning consortium

We would like to make sure that a patient representative and/or a representative from local charity/voluntary organisations sit on the Health and Wellbeing Boards. We believe this is essential if the voice of patients is to be heard at the local level and have their needs met.

February 2011

[1] : 18 th November 2010

[2] Pain: Breaking Through the Barrier; Chief Medical Officer’s Report 2008

[3] The Patients Association, Public Attitudes to Pain , November 2010

[4] Pg 30

[5] National Association of Patient Participation (2007) 'Survey of patient participation in general practice (2005-2007).

[6] Subsection 14B(6) and section 14D

[7] Sections 14S and 14T

[8] Pg 26

[9] Clauses 60-62

[10] Clause 63

[11] Clauses 136 to 141

[12] Clause 150

[13] Part 5 of the Bill

[14] Clause 185

[15] Page 140

[16] Page 143

[17] Frances Hasler, Healthwatch Development Lead, presentation to the Patients Association, January 6th 2011

[18] S Parsons et al. The quality of patient engagement and involvement in primary care . The King’s Fund 2010.