All ears: have the public's preferences for Health Bill changes been heard?

The pause is over. The government has responded and now patients, service users, carers and their organisations can see what might happen to their demands and suggestions.

National Voices and its 130 member charities supplied the NHS Future Forum with the document 9 Big Shouts, summarising over a year of submissions to government consultations and debates on the Health and Social Care Bill. They came supported by solutions, suggesting changes both to the bill, and to the emphasis of the wider reforms.

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Seamless services

The top shout was for integration and has been answered in full. Services that work together for defined patient benefits are the foundation both for meeting the Nicholson challenge and for person-centred care. Patients want seamless services and continuous care.

The government has recognised that the bill’s original “duties to integration” were inadequate. They merely encouraged organisations to “work closely together”. Studies of joint working show it rarely produces clear benefits unless the goals are clearly defined in tangible benefits to targeted patient groups. Now the bill will lay down the purpose of joint working – “integrated health and social care around the needs of users” – and new duties will require commissioners and regulators to collaborate to this end.

We called for a rapid policy review to establish how competition and collaboration can be used to achieve integration. This remains necessary to help the NHS Commissioning Board with its new obligations to provide this guidance to others and to model innovative ways to achieve integration.

We still need the secretary of state to cement the direction of all reforms by putting the goal of integration at the top of the mandates for the commissioning board.

Horizontal collaboration between all services – primary, secondary and community healthcare, social care and voluntary sector providers should place a supportive net of joined-up, proactive care packages under all patient groups, and particularly those most likely to have illness.

Board guidance, National Institute for Health and Clinical Excellence standards and pathway guidelines, and advice from clinical networks – which the reforms should continue to support and maintain – must all line up in the same direction.

The government and the commissioning board should consider how to increase care trusts, building on the success of Torbay and other pilots.

Getting care right

However, the government’s changes focused on the legislation do not guarantee to deliver the second shout – right care, right place, right time. Patients and service users want to improve their own health, to manage their conditions, to learn to use health information and to prevent emergencies. They want to play their part in deciding treatments and putting together care plans. To do this they need support and services they can navigate easily.

There must be a new deal for people with long term conditions, entitling them to access, a jointly prepared and annually reviewed care plan, and a designated care coordinator.

Commissioning guidance and standards must specify the range of care packages and services. They should include best practice in improving health literacy, self-management education and sharing treatment decisions. The best elements of current national strategies and service frameworks, to which our organisations have contributed, must be played through the new system.

National Voices called on the government to “take all necessary measures” to ensure that the quality, innovation, productivity and prevention programme works for us. So far, we are seeing short term cuts, not up-front investment in new patterns of care.

User friendly information

Our third shout, information and communication that work for us, was also outside the bill’s scope. It was an explicit call for the government to shift the focus of its choice and information revolution strategies. Our member charities and service users said choice between competing providers is not their priority. It is the choice of treatment and care package.

Rather than focus on producing bundles of performance data for choice of provider, the emphasis should be on closing the information gaps that inhibit patient activation. Guidance and NICE standards should encourage information support as integral to therapy.

Commissioners should be encouraged to commission this support from voluntary organisations that have a close understanding of user needs.

Putting patients first

In this mêlée of cuts and reforms, our fourth shout was:  end paternalism – do not lose momentum for practice change. The government’s vision is “putting patients first”, and it now needs to describe concrete actions to make that happen.

Together with clinical champions and patient organisations, it should mount demonstration programmes and social marketing campaigns among professionals; develop new patient experience outcome indicators to monitor practice change; and roll out an ambitious programme for patient decision aids.

The commissioning board should model the best ways to contract and performance manage providers to follow best practice in patient engagement and experience. Those providers that cannot must be replaced.

Confront inequalities

National Voices members have serious concerns that reforms based on localism, autonomy and competition will worsen inequalities. Hence our fifth shout: no new lotteries – tackle inequalities.

We need early clarity on which conditions will be covered by local and national commissioning respectively; and assurances that people with rare conditions, or who need specialised services, will not lose out because the NHS fails to identify and count them, or because of poor links between the local and the national.

GP practices should be performance managed to reduce inequalities; NICE standards should be mandatory, as should participation in clinical audit; and the risk of wide local variation in restricting treatments should be mitigated.

Patient influence

Shouts six, seven and eight focused on strengthening the bill’s limited provision for patient and public involvement.  The government has responded encouragingly: the PPI duties will be stronger, and extended to Monitor and the health and wellbeing boards; there will be proper governance of clinical commissioning groups, with lay involvement; and greater transparency, with clinical commissioning group and foundation trust boards required to meet publicly.

There are two pieces of this engagement jigsaw still to put in place. One is HealthWatch. Without guaranteed independence and funding, it will simply fail to be the consumer champion the government envisaged.

The other is to ensure the involvement of patients, service users, carers and their organisations in all levels of commissioning. The untapped value of service users’ expertise in their condition, using services, and knowing how things can be improved, is key to redesigning models of care. We want to be co-commissioners of services and co-producers of public value. We strongly welcome multiprofessional commissioning, but there must be a place in the “senates” for all those with expertise – and that includes patients.

Finally, we need a transition plan for patient safety following the abolition of the National Patient Safety Agency.

Policy of openness

In response to shout nine – tell us when things go wrong – the government has promised that a duty of candour to provide honest disclosure of mistakes will go into provider contracts. National Voices still argues for this duty to be statutory. And we note that our call for the Mid Staffordshire inquiry’s lessons to be absorbed into the bill may well present the next big health challenge for a currently relieved health department.

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