Health and Social Care Bill

Memorandum submitted by All Party Parliamentary Group on Complex Needs and Dual Diagnosis (HSR 48)

The APPG

1.1 The All Party Parliamentary Group on Complex Needs and Dual Diagnosis (APPG) seeks to raise awareness of the issues faced by people with multiple complex needs to ensure this group remains on the political agenda.

1.2 The Group is co-chaired by David Burrowes MP and Lord Victor Adebowale CBE, who is also a member of the NHS Future Forum. Turning Point [1] acts as the secretariat to the APPG.

People with complex needs

1.3 Our submission focuses on people who are those loosely defined by their chaotic lifestyle, complexity of need and co-morbidity of a range of conditions including; mental health, learning disability, substance misuse, physical disability, homelessness and/or long term conditions. They pose a challenge to commissioners and providers of services across a number of agencies for reasons including [2] ;

- Reluctance to engage with mainstream services

- Potential cost of identifying and meeting their needs.

- Low demographic prevalence but high cost.

- A workforce lacking the required skill set to cope with the complexity of need

- The realisation that one agency alone cannot address all the presenting issues

1.4 The APPG strongly advocate that those with the most complex needs should be the litmus test for any changes made through the Health and Social Care Bill.

Introduction to response

1.5 If the new system is to improve health outcomes and reduce inequalities it needs to start with those furthest away from the centre who often only use health services in a crisis and take action to ensure the government’s pledge to ‘improve the health of the poorest the fastest [3] .’

1.6 The key concerns of The APPG are:

1. Community engagement in commissioning

2. Accountability for addressing health inequalities of the most excluded groups.

3. Risks to those not registered with their GP

4. Risks of competition

5. The threat of further fragmentation

6. GPs lacking specialist knowledge

1.7 These relate to the Bill as a whole however where specific recommitted Clauses apply these have been noted. The Recommitted Clauses referenced are:

· in Part 1, Clauses 1 to 6, 9 to 11, 19 to 24, 28 and 29 and Schedules 1 to 3;

· in Part 4, Clauses 149, 156, 165, 166 and 176;

· in Part 5, Clauses 178 to 180 and 189 to 193 and Schedule 15;

Concerns and Recommendations

1.8 Concern 1: Primarily in regard to Part 1, Clauses 9 to 11 : The Bill lacks sufficient assurance that commissioners will engage with communities to ensure the needs of people with complex needs, are heard.

- One of the founding principles, or assumptions, of the proposals is that GPs are the right people to commission services as they know their patients. Numerous surveys by organisations have found that the majority of people either do not feel their GP understands their needs or parents/carers do not go to their GP in relation to their child’s needs [4] . We therefore welcome changes to the Bill to make GP Commissioning Consortia Clinical Commissioning Groups and the wider membership of these.

- One of the biggest obstacles facing people with complex needs is the lack of integrated commissioning which currently exists. This commissioning process often fails to integrate different agencies around the individual due to competing priorities and a lack of understanding around what is needed to meet people’s complex needs.

- The dialogue around choice and the principle of ‘no decision about me without me’ is a welcome one, however real choice cannot exist without engagement with communities and services being designed and commissioned to reflect their priorities and needs.

- As Turning Point’s model of community-led commissioning, Connected Care, has demonstrated, the priorities of the population may sit at odds with those of local authorities or PCTs. By linking community priorities with those of health and social care commissioners, more integrated services can be commissioned that not only meet people’s needs but save money. The Connected Care approach has been found to deliver significant net benefit to the public purse with every £1 invested a return of £4.44 is achieved . When the benefits of improving quality of life to are included, a return of £14.07 is gained for every £1 invested [5] .

1.9 Recommendations

- There was agreement from all members of the Group that there needs to be built-in mechanisms within Clinical Commissioning Groups and Local Authorities to ensure users of services, their families and carers, and wider members of the local community all have a say in commissioning decisions.

- Part 1 Clause 10: Clinical Commissioning Groups should be certified to ensure they have engaged, considered and acted on feedback from the communities they serve. This certification should be granted by the NHS Commissioning Board which will hold Clinical Commissioning Groups to account along with Health and Wellbeing Boards (HWBBs). If during the annual report process evidence is lacking for this activity, the Clinical Commissioning Groups should lose their certified status and therefore their ability to practice.

- A similar certification process should also apply to HWBBs to ensure community engagement when drawing up the JSNA. As Homeless Link suggest, this could be based on a set of Quality Standards for involvement which should be published to guide consortia and local authorities in its role and to ensure they do not fall below this minimum standard.

- Part 5 Clause 166: HealthWatch organisations should have clear regulations to ensure all patient groups are represented fairly, based on a detailed understanding of the groups that exist locally. Those with complex needs and dual diagnosis are often under-represented in this area, particularly people from BME groups, young people and those with mental health conditions and people with a learning disability. It therefore cannot be assumed that this information currently exists and should be an immediate priority for the all of the new structures to action.

- At the heart of public confidence in relation to NHS commissioning is it being seen as accountable and transparent and recognising community members. Therefore engagement should be embedded within an agreed definition of commissioning which is ‘the means by which you understand the needs of an individual and/or a community such that you can build a platform for procurement [6] .’

1.10 Concern 2: The Bill does not provide enough accountability across the system for addressing the health inequalities of the most excluded groups.

- Although the Group welcome the inclusion of specific duties to reduce inequalities in the Bill, there is a lack of detail about exactly how the Clinical Commissioning Groups, Local Authorities or the NHS Commissioning Board will be held to account for meeting these duties.

- The reformed NHS must ensure that groups of people who are not seen as ‘compliant, mainstream or cost effective’ are not further excluded from society, as their issues will not disappear but potentially escalate and be even more challenging and expensive. Therefore the reduction of health inequalities and social exclusion must remain a goal of both commissioners and providers as well as the wider responsibility of mainstream society [7] .

- With competing priorities, reduced funding and an increasing remit for the HWBBs there is concern that without stronger accountability built into the system, at both the local and national level, and penalties for inaction, this responsibility will not be prioritised.

- This issue of accountability is further exacerbated by the multiple local structures being proposed, each with different capacity and capability to respond to the needs of excluded groups; across different geographical boundaries; held to account by different bodies. An example of this is the division between the role and function of the National Commission Board, Specialist Commissioning, HWBBs and the function of Public Health England in regard to custodial health care and community offender work. It is still unclear how integrated care pathways with partner agencies across the health and criminal justice systems will emerge from this arrangement [8] .

1.11 Recommendations

- Part 4 Clause 176: JSNAs, responsible for identifying health inequalities within a locality, should be required to include assessment of groups within communities with the poorest health outcomes or access to health services. This should ensure they represent fully the needs of those with complex needs who are currently often not represented and therefore excluded.

- Clinical Commissioning Groups should report on how their commissioning priorities are based on the JSNA and how they have responded to the needs of people with complex needs in direct relation to how their actions have reduced inequalities in access and outcomes. Directors of Public Health should also report annually on how local progress towards addressing the needs of the most disadvantaged groups have been met.

- Link reducing inequalities to the health premium and ensure Clinical Commissioning Groups, Local Authorities and the NHS Commissioning Board are held to account for reporting on this annually and are penalised if sufficient in-roads (based on needs identified by the JSNA and shared within the HWBBs) are not met.

- Part 1 Clauses 19 -24: Clearer accountability needs to be set out in the Bill as to how the NHS Commissioning Board will hold Clinical Commissioning Groups to account for reducing inequalities. Homeless Link suggest this could be done by appointing an Inclusion Board to oversee this responsibility, while others suggested making generic paragraphs in the Bill regarding reducing inequalities, make particular reference to people with multiple, complex needs and work in mechanisms for Clinical Commissioning Groups to review actions against them.

- Responsibilities and ownership of different parts of the system between each local structure need to be set out clearer in accessible Terms of Reference so they are each clear on their remits and functions, and the public are able to hold the right part of the system to account.

- There needs to be more mention in the Bill as to how the criminal justice system will be integrated within the health and social care system as many people with complex needs will be in or at risk of involvement in the criminal justice system but it is unclear how this will be fully integrated into current structures [9] .

1.12 Concern 3: Part 1 Clause 9: There is significant risk to individuals who are not registered with a GP of being overlooked and effectively excluded from the system.

- There are a vast number of people with complex needs, who are homeless or who have been in contact with the criminal justice system, who are not registered with a GP and risk becoming invisible.

- This is often because individuals have been turned away from GP surgeries and refused registration due to their perceived ‘chaotic or transient lives.’ Homeless Link have found that 1 in 10 homeless people are refused GP access for this reason. [10]

1.13 Recommendations Part 1 Clauses 9-11:

- In their commissioning plans Clinical Commissioning Groups must identify groups in their areas who are not registered and take steps to ensure their needs are understood and met

- There must be clear channels directly into Clinical Commissioning Groups by community groups working specifically with excluded groups when it is perceived that their needs are not being met sufficiently.

1.14 Concern 4: Applies across the whole of the Bill but applies to Part 3 Clauses 63 to 75: Competition within the market will provide a disincentive to treat certain groups who are perceived as too costly or complex.

- Linked to reducing health inequalities, outcomes for the most complex groups can be harder and take longer to achieve. There is a risk that with a standard price the best quality providers will choose those groups with the lowest risk and highest throughput, leaving those with the more complex needs with limited or no choice of provider at all.

- The Group has seen repeatedly when market forces are introduced to the public sector they do not deliver for people with multiple needs from disadvantaged groups. This is because they do not fit into neat categories or models of service provision. They are instead, a small, potentially costly group to work with.

- There is also a risk that increased competition, if not monitored effectively by the economic regulator, will lead to inconsistencies across the country. One specific concern noted at the meeting was that the tension between localism and national consistency and the portability of the Care Pathway Approach (CPA) for individuals who wanted to take their package of care to a different county. Competition needs to be monitored in such a way that ensures local solutions but provides national consistency.

1.15 Recommendations

- The new tariff structure needs to reflect incentives to providers to deliver healthcare to people who have multiple needs or who are socially excluded, reflecting the complexity of treatment for some patient groups and how long this may take.

- One further way to ensure quality could be through the adoption of NICE guidance for all providers, including non-NHS organisations going forward under Any Qualified Provider principles. However the Group was unable to confirm whether or not this will be the case.

- Monitor’s role needs to ensure a mixed economy of provision within which the efficiency of procurement and management is a core duty. This acknowledges the widely held view that competition is not a force of nature and that markets need to be managed where resources are limited.

1.16 Concern 5: The new structure, as set out in the Bill, threatens to fragment a system already lacking integration.

- Although it can be potentially expensive to establish, integrated care pathways have been proven to save a significant amount of money, particularly for people who have multiple needs.

- The current economic pressures provide an opportunity for working collectively in order to be more efficient and cost effective. Research has found that integrated early intervention programmes can generate resource savings of between £1.20 and £2.65 for every £1 spent (POPPs, LINKAge Plus, Supporting People, self care schemes [11] .)

- The commitment to early intervention also supports a more integrated approach where, for example, someone is homeless. ‘Despite the high levels of ill health and multiple conditions it is rare that there is a targeted NHS response to the needs of homeless people, particularly in primary care. As a result homeless people have a much higher use of emergency services than the general population and higher use of acute hospital services. [12]

- The potential to lose the momentum gained over the past few years, both in personnel skill/expertise and organisational structures, increases with the fragmentation of services and lack of national guidance. This could become an unintentional consequence of the proposals to localise services without putting the structures in place to ensure national priorities are translated to local delivery.

- Stability and continuity of services within the drugs and alcohol field, for example, has built up a particular cohesiveness around working together with complex clients. There is a good deal of trust that has been built up in most DAAT partnerships through the current arrangements which works extremely well together on all levels. There is a risk of this being dismantled under the proposed changes which will lead to reduced efficacy and quality [13] .

- A concern expressed by the Centre for Mental Health is that the risk around fragmenting mental health services is two fold: increased competition within the market will likely lead to the ‘cherry picking’ of those ‘most easily reached’; and the risk of disconnect between local and national commissioning of specialist services with the NHS Commissioning Board responsible for secure mental health services and prison healthcare.

1.17 Recommendations

- It is essential that local and national commissioning is closely linked and that Clinical Commissioning Groups maintain responsibility for people from their localities while they are in custody. The risk otherwise is that people whose needs are most complex, and costly, will continue to experience inconsistent care, gaps in provision and delayed discharges when they are at their most vulnerable.

- Rhetoric around integration set out in the Health White paper and the subsequent Bill needs to be assured through the implementation of guidelines, commitments and structures that guarantee that each part of the system works together in a proactive, evidenced way. This needs to be a responsibility owned by each health, social care and public health lead who is then held accountable for any failure to work together.

- The use of locally integrated service or community budgets across a range of services should be actively encouraged by the Government.

1.18 Concern 6: In relation to Part 1 9 to 11: Clinical Commissioning Groups lack adequate responsibility to mitigate against the risks of GP’s expertise being general, rather than specialist .

- As numerous surveys have shown, including one conducted by Turning Point, GPs will require specialist support to commission services for people with complex needs if they are to achieve the best possible outcomes for them.

- To address the requirements of people with complex needs, assessment, screening and referrals need to be undertaken by specialists who understand the complex nature of an individual’s life. As one local authority outlined, ‘a major concern is that if clients with complex needs are not specifically catered for, they may get left out of the ‘loop’. [14]

1.19 Recommendations

- In the context of people with complex needs, local services may need to draw upon specialist hubs or partner organisations in order to help them achieve positive outcomes for individuals.

- GPs should be actively encouraged by the NHS Commissioning Board to build strong links with local partners and to establish joint commissioning arrangements as early as possible.

- Training and education needs to involve service users and an element of joint learning between professionals and those with the most complex needs.

- There should also be an assurance that the provider of any commissioned service has the relevant skill set to deliver it. Currently this is not necessarily the case which means people are referred to generic services which do not meet their specific needs due to a lack of sufficient skills [15] .

July 2011


[1] Turning Point is a leading health and social care organisation with over 45 years experience of providing services for people with complex needs. Turning Point has 200 service supporting those affected by drug and alcohol misuse, mental health problems and those with a learning disability. More information can be found on www.turning-point.co.uk

[2] List based on one provided by NHS South West

[3] Department of Health, Liberating the NHS, 2011

[4] A survey by Contact a Family found three quarters of parents with disabled children did not go to their GP in relation to their child’s condition (2011). A Turning Point survey found that 50% of those using our services did not think that their GP understood their needs, beyond physical health (2010).

[4]

[5] Cost benefit analysis conducted by The London School of Economics’ Personal Social Services Research Unit

[6] Lord Victor Adebowale, Turning Point

[7] Response provided by Lynn Emslie, Head of Offender Health Development, NHS South West

[8] Head of Offender Health Development, NHS South West

[9] Concern noted by Revolving Doors Agency

[10] Homeless Link, Interim findings from the Health Needs Audit, 2010 www.homeless.org.uk/health-needs-audit

[11] ‘Assessing the evidence for the cost benefit and cost effectiveness of integrated health and social care’ (Turning Point, Feb 2010.)

[12] St Mungo’s A 2010 Department of Health report found that homeless people attended A&E five times more often than the local average and inpatient costs were eight times higher than the comparison population ( Office of the Chief Analyst, Healthcare for Single Homeless People, Department of Health, 2010)

[13] Royal Borough Kensington and Chelsea

[14] Royal Borough of Kensington and Chelsea

[15] Representative from Leicestershire Partnership Trust

Prepared 19th July 2011