Health and Social Care Bill

Memorandum submitted by the National Centre for Independent Living and Radar (HS 95)

About NCIL

The National Centre for Independent Living (NCIL) is a national campaigning, support, advice and consultancy organisation that aims to enable disabled people to be equal citizens with choice, control, rights and full economic, social and cultural lives.

About Radar

Introduction & summary

We welcome the Health and Social Care Bill as a starting point to i mproved involvement but we are concerned about several aspects of the proposals . Please note our detailed responses to the NHS reforms . Given the enormous scope of the intended reforms, we miss in particular any provisions for the effective promotion and facilitation of choice at an individual level . Greater individual choice is essential to balance the abolition of other safeguards for the quality and continuity of care such as the waiting times targets. For the reforms to be effective they must work for every individual during every single encounter, and involvement cannot be limited to the very few and same individuals representing all others solely at a strategic level, eg at Joint Strategic Needs Assessments.

In this short briefing w e first ly outline how we think health and social care need to be truly centred around the individual to achieve ‘nothing about me without me’ (1. - 6 .) :

· Care and support should be contextualised within the person’s life domains (eg family, work, hobbies) so that people’s lives can be improved and not just conditions

· Effective provisions for the promotion and facilitation of choice and control

· Peer support needs to be recognised and expanded wherever possible

· Ensuring the role of user-led and patient organisations at individual and local leadership levels

· Sub-contracting primary and ‘secondary’ choice-supporting providers on fair terms

· Shifting from a capacity-driven system to a demand-led model

Next, we attend to the concerns about more global provisions in the bill which we share with many other organisations , most notably with the King’s Fund ( 7 . - 9 .) :

· Patient choice alone cannot prevent fragmentation of care and support

· Transition to ‘any willing provider’ must be clear, fair and comprehensive

· Local system leadership must be established, joined up and made accountable

1. Care and support should be contextualised within the person’s life domains (eg family, work, hobbies) so that people’s lives can be improved and not just conditions

We have noted the statement in the NHS White Paper 2010 that "involving patients in their support and treatment improves their health outcomes". Indeed, people with similar conditions can experience not only different qualities of life but also different health outcomes, depending on disabling barriers faced and individual responses that people themselves are taking. This suggests that choice and control do not just have ‘soft’ add-on effects but should be seen as integral to care and support pathways. There is a choice pathway just as there are (clinical) care pathways: many people are initially resistant to making choices for various reasons which may relate to fear of reduced attention from a professional for example, whereas others recognise and benefit greatly from full involvement early on.

The exclusive focus on clinical care pathways wastes millions of opportunities to improve health outcomes. People must be given the space to contextualize their support and treatment within their life domains. Professionals should work with the person, pick up on that context and improve people’s lives rather than maintaining the traditional roles of an efficient ‘case manager’ and ‘consultant-led teams’. Alternatively, such choice-supporting functions should be given to suitable (secondary) providers. Likewise, inter-professional communication must no longer be driven by insular professional cultures and systems but opening up to opportunities for further meaningful involvement with the person.  

Greater choices should become the norm even in matters that many people would locate outside of their control or expertise. Public education is needed not just for people with additional needs but for everyone to understand and make best use for themselves of the link between involvement and health outcomes. It is then for people to decide whether to go for a set ‘decision aid’ (for the specific care area or treatment at stake) or more personalised 1-1 support from someone they trust.

Further scoping should be done to explore and operationalise the ways and degree to which people make active and informed choices (including how the degree of choice impacts on health outcomes within and across care areas). We would be very happy to assist any such redesign or whole systems change.

2. Lack of provisions for the promotion and facilitation of choice and control

Several provisions in the Bill (eg ‘any willing provider’; right to request / provide, etc.) will spark greater competition, which places significant demands on disabled people to exercise choice and control. Given the significant decrease in targets, regulatory frameworks and regional leadership, people’s informed choices become key drivers towards quality, continuity of care, collaboration and equality of access within the NHS. Therefore, individual choice (and not just the voice of groups) should be placed at the centre of systems and processes.

However, the current provisions for ‘any willing provider’ merely replicate the medical model that is so deeply rooted in the NHS. According to the plans, it is still the ‘what’ and not the ‘how’ which GPs will commission, while local HealthWatches will solely focus on advocacy in the form of complaints ‘after the event’. In the proposed NHS landscape the promotion and facilitation of choice and control is either taken for granted or there is no understanding of this kind of ‘commissioning support’. At any rate, professionals hardly consider involvement as part of their role. Indeed, choice starts with equal access to information and peer support prior to crisis point in either social or health care. A responsive mindset and readiness for individual involvement need to develop over time across the different settings. The need for cultural change applies to both individuals and professionals, and so both sides of the relationship need to be supported and trained.

Support and information to promote and facilitate choice should become integral, recognised and paid parts of any healthcare pathway. These parts should be separately commissioned or subcontracted to suitable providers. Such a two-pronged approach (to direct ‘primary’ providers and ‘secondary’ choice-supporting providers) needs to be reflected in extensive staff engagement. It is certainly not sufficient to make it a requirement for a provider to be listed under ‘Choose and Book’. Any technical or system (eg software) changes should be supported by an extensive, parallel cultural change programme, in order to approach and overcome staff resistance within the NHS and primary provider organisations. For example, any primary provider should be allocated a percentage for the promotion and facilitation of choice and should be required to report on how this amount has been spent. Beforehand, it would be beneficial to map and think through the relevant systems and processes of any care pathway.

3. Peer support needs to be recognised and expanded wherever possible

All good care and support starts and ends with good relationships, and people have different ways to go about them. It is advisable to start involvement at a lower level of (social care) needs or way before that rather than introducing the benefits of involvement once life-threatening situations have been reached. While the NHS Greater Choices consultation outlined the scope of available choices to achieve better outcomes, the actual case studies only confirmed the obvious gaps in going about them in real life: how do the various patients in those ‘cases’ actually come to meet and share personal experience and empower each other so effectively?

There needs to be more facilitated activity-based community space exceeding health and social care issues, coupled with targeted outreach activities to seldom heard groups. If people are supported to share, pass on and exchange information on support and care and are encouraged early on to pool personal (health) budgets, this fosters not only public health but also a strong base of social capital within the communities.

Many user-led organisations (ULOs) and also patient-led support organisations help form and build on these relationships, and their focus has always been on the person in context. Paid ‘patient buddies’ could also be called upon where this is requested by the person so that they can hear directly from a peer who has gone through a similar path previously. In addition, user-led mutuals could be funded to be set up and run so that both individuals and groups who share certain needs are supported. The Expert Patients Programme or Experts by Experience could assist widely in this respect, and we would be happy to facilitate this if requested.

ULOs have widened access to their support services to accommodate for and actively reach out to individuals with any of the protected characteristics. It will be particularly crucial to continue to engage seldom heard or reached groups via other community links. For instance, there are very successful partnerships between community hubs that are good at engaging with specific ethnic minorities (where people would gather for social activities) and NHS services that are good at providing secondary care or crisis treatment. Joint employment of staff (with and without lived experience) and co-location are often very effective drivers to enable people from all backgrounds to access services, exercise choice in their ‘natural’ environment at their pace and on their own terms.

4. Making involvement count – ensuring the role of user-led and patient organisations at individual and local system levels

ULOs already work on the delivery of personal budgets, including outreach/ information, self-assessment, support planning, brokerage, monitoring and review, and pooling budgets. Some ULOs have additionally been commissioned by PCTs to support personal health budgets across ‘care areas’ and/or to provide information and advice on equipment for example. We feel it is important that this expertise should be built on and used to benefit both those using services and GPs in fulfilling their commissioning role. Yet, in an environment of fundamental cuts this kind of function is often the first to be overlooked by local decision-makers with potentially serious consequences for the delivery of the NHS reforms. As a result, we feel that there needs to be very clear guidance or a protocol for local authorities at least.

ULOs are also well placed to work across sectors which would ensure some strategic overview across ‘care areas’, a focus on aspirations rather than just needs and some independence in the bottom-up process of the proposed integration of health and social care; ‘bottom-up’ would then mean driven by people themselves rather than by public sector or Third Sector Organisations. A strong ULO voice would also help to balance out the different views and experiences that GPs will have within their consortia about different patient groups and health inequalities distributed differently across any single locality.

The c urrent provisions for patient and public engagement in the Bill are weak , and we find it inappropriate that there is no mandatory patient representation on either GP consortia , health and well-being boards or the NHS’ Commissioning Board . Meaningful involvement would include a public right to petition the NHS Commissioning Board to undertake a review into a particular health service or a thematic issue, such as health inequalities. Finally, t he NHS Commissioning Board and GP consortia should be under an obligation to publish all information relating to their commissioning strategy and planning, results and outcomes including their rationale and justification for decisions.

As the bill currently stands we cannot see how people would be able to directly influence the commissioning of the services they use. This flags up questions about the demarcation between the DH, GP commissioners and people who would all make choices: What is the reach of the ‘Any Willing Provider’ concept? Will GP consortia be permitted to commission and therefore select particular providers or will they simply determine what types of treatment are to be offered?

There is some indication that the GP consortia will be compelled to offer all patients a choice of any nationally licensed provider who offers the relevant treatment and has applied to the consortium. However, the Department of Health seem to be denying this. It is at least insufficient to disregard ‘Any Willing Provider’ in the Bill and not to give it a legislative base . We would not want to have all these fundamental questions left open until after the Bill has passed.

5. Sub-contracting primary and ‘secondary’ choice-supporting providers – making it work

We would hope that the government delivers a ‘think personal – act local’ approach to GPs commissioning primary providers. A more levelled playing field is key to this.

There should be clear provisions that require GP consortia to enhance active engagement and involvement of patients. As outlined in section 2, we would propose that any primary provider should be allocated a percentage for the promotion and facilitation of choice and be required to report on how this amount has been spent. Further criteria which we would expect to be applied to ensure the fitness of a primary provider or associated secondary choice-supporting provider) are:

· ‘Social return on investment’ that can reasonably be claimed for previous work by any provider should become an essential criterion for fitness - as set out in the Public Services (Social Enterprise and Social Value) Private Member’s Bill

· Service agreements or preferred provider lists to be opened up to more flexible and informal types of support, user-led mutuals, self-employed people or micro enterprises and all those support services that are exempt from CQC regulation

· Ability and willingness to cooperate with information and support providers on a level playing field and clear accounting of how a set percentage of unit costs would be or has been spent on information and support to promote and facilitate choice

· Wherever possible, the ‘right to a personal health budget’ should be applicable so that the service or support concerned can be paid out of personal (health) budgets, either directly as a cash payment or through third party organisations

Furthermore, small providers (both primary providers and secondary choice-supporting providers) should be supported in the following ways in order to create a more level playing field:

· CQC to set out ‘softer’ requirements at an affordable cost for emerging small providers

· CRB checks – which often ‘passport’ contracts – must be provided to everyone including self-employed people who currently cannot request CRB checks on themselves (which CQC requires them to have)

· Improving ‘test-trading’ and permitted earning provisions to enable people to make the transition from benefits to becoming a small provider

· Payment by Results (PbR) to be abolished for all commissioning and purchasing activity involving those smaller providers who are not able to entertain PbR because they do not have the necessary reserves to underwrite service delivery in advance of payment

· Start-up or transition funding would enable the necessary fitness for emerging support and information facilitators in the community or existing ULOs and patient-led support organisations intending to widen their remit

· Private Hire Vehicle Legislation should not prevent willing providers from occasional transport of people just because they do not reach the economies of scale requited to pay such expenditure

The approach to providers should be varied depending on size and the types of support provided. A directory with all providers should be established to ensure effective choice at the outset.

6. Shifting from a capacity-driven system to a demand-led model

We also believe that people’s choices – if supported and strengthened – will enhance the desired shift from a capacity-driven system to a demand-led model. There are some indications that the proposals in the Bill will kick off such a shift, which we welcome. We support the ‘right to choose to register with any GP practice’ and the envisaged ‘right to a personal health budget’. We would hope that personal health budgets will be extended beyond the existing pilot schemes to become the norm. In some respect, the service user or patient is becoming a ‘change agent’ to ensure a great deal of the requirements for quality and continuity of care will take place. We hope that ULOs and other patient organisations will be equipped to stand by disabled people in this change agent role, inform them and support both shaping new ideas for support and making them happen.

The NHS and councils should redesign parts of their business processes and focus on support that is demand-led rather than driven by staff capacity. There is as yet no indication of innovative approaches which allow both choice and control at a larger yet meaningful scale and the required shift in power – central government has not put in place effective levers which require providers to co-produce new types of support together with user-led organisations. Instead, locally, disabled people are served packaged choice options if anything. Yet, we could go even further than merely co-producing new services. If the ‘right to request’ (NHS) and the ‘right to provide’ (Adult Social Care) through employee-led mutuals would be extended to a ‘right for disabled people to provide (paid!) support for and by themselves’, we would see a considerable reduction of waste and increased choice and control and more disabled people leading full economic, social and cultural lives. This prospect would also give some practical meaning to the proposed ‘right to challenge’ for the community to replace services that are not demand-led and lack sufficient quality and continuity of care.

We hope that further work will be undertaken o n pooling budgets and user-led mutuals to the benefit of the proposed health and social care reforms .

7. Patient choice alone cannot prevent fragmentation of care and support

While we have pointed out the great benefits of effective choice and involvement, there are also significant concerns about fragmentation of care and support which cannot be prevented by stronger patient choice alone. This applies in particular to unplanned care and care areas where outc omes cannot be clearly measured or where it would be very difficult to identify peer support and promote and facilitate effective choice.

It seems that patient choice , continuity and quality of care could be undermined by the provisions for Monitor to specify a maximum tariff – thus allowing competition on price: will patients then only be able to choose between the cheapest providers?

Collaboration and integration between health and social care is paramount, and we welcome the provisions to enable the NHS Commissioning Board or consor tia to pool funds. However, the absence of a duty to promote integration on the part of GP consortia could mean that positive links established between councils and PCTs will be lost.

We think that a rigorous evaluation to address the effects on the current 141 GP pathfinder sites must be carried out before the proposed reforms and GP consortia would be rolled out nationally.

8. Transition to ‘any willing provider’ must be clear , fair and comprehensive

For ‘any willing provider’ to be effective, some resources must be freed up to benefit new more effective and more demand-led types of support and care. While we favour the shift from a capacity-driven system to a model that is based on user-demand, we have concerns that transition plans will not be clear and comprehensive. As yet, de-commissioning of large block contracts or in-house provision is either avoided or rushed without clear and comprehensive transition plans that make full use of the savings and pass them on to more innovative types of support. The process must be flexible enough to challenge existing providers and allow new and innovative providers to enter the market. Patients need to be assured that continuity of care where people live will be paramount and that any (desirable) changes of providers in terms of location and service re-configuration will be carefully scoped and not just down to the choices of the majority of patients.

Care needs to be taken that conflicts of interests are first identified and then tackled (rather than simply avoided), if GPs are to commission and to provide local services. Transparency including published minutes of GP consortia meetings will be key to this. But we note that there is a serious concern about commercial confidentiality, which provides a wide-ranging exemption under Section 43 of the FoI Act. The constitutions of GP consortia may only provide very limited safeguards to any of these concerns, and GPs should of course still be able to focus on providing services by themselves.

The removal of direct reporting lines and the introduction of non-public providers will place the NHS out of the reach of Parliamentary scrutiny. The Bill makes some weak provisions for Select Committees to request information from the NHS bodies but the indirect relationships between them and the Secretary of State, who is accountable to Parliament, leaves open what the scope of ordinary Parliamentary Questions and other Parliamentary processes will be in relation to their work. M ore concerning will be the scope of Parliamentary scrutiny over providers and consortia who are even further removed from the Secretary of State.

Amendments on FoI and other transparency rules should go hand in hand with provisions to guarantee that all the NHS bodies, including all providers, will be accountable to Parliament, especially as this is likely to be something that attracts wider political support in Parliament itself.

9. Local system leadership must be established, joined up and made accountable

We have great concerns that local players are being left to their own devices without a minimum of public accountability (despite all the rhetoric to the contrary ). Furthermore, GP consortia will only have a limited duty to involve the public (but many patients would of course know that the most effective place to be heard will be their GP’s surgery).

T he proposed Health and Well-Being Boards would be largely run as public sector clubs without any local democratic representation (apart from one councillor); not even third sector organisations are to be included under the current provisions let alone ULOs . On the other hand, it is unclear what powers those local boards actually have. Currently, this does not even include powers to require information, without protection of commercial confidentiality, from consortia, their contractors, and all providers of NHS care in their area. Indeed, these powers sh ould be used as a way of bringing firms contracted to undertake commissioning functions in to the range of public accountability, which would sit with the concept of the Boards overseeing the consortia in a strategic way.

HealthWatch is without any teeth – locally , HealthWatches w ould be built on LINks but not even enjoy their predecessors’ relative independence: future contracts will be issued by councils directly to a set organisation and not to an overarching forum of community voluntary sector providers. We would still hope that the national body had powers over private providers so that it could be used to expose them for bad practice and/or deter them from the market in a similar way to other provisions for further transparency and oversight.

All these concerns about global provisions (for local voice and campaigning) should not distract from the need to enable the promotion and facilitatio n of choice at individual level to which we have dedicated the first part of this briefing.

March 2011