Hampshire County Council

Health Overview and Scrutiny Committee Item 6

23 September 2008

Proposals to Develop or Vary NHS Services

Report of the Chief Executive

There is a need to be mindful that public information campaigns, whether national or local, are very likely to result in significant increased demand and expectations on current services. Public information activities need to be preceded by or at least run in parallel with training and raising awareness for staff, particularly in primary / community services and other front line areas, to provide them with the necessary skills. This will take time.

We suggest that the wide breadth of local voluntary organisations, i.e. not only those specifically related to older people's mental health, are involved in local solutions and that people are supported to maintain their involvement in organisations within their communities, such as the WI and parish councils.

We welcome the proposal in the consultation document to identify core training competences for all staff groups (professional and vocational training). It would be useful to have some idea about the expected timeframes for any national training developments. We suggest considering: making some element of dementia training mandatory for all community health and social care staff, that mentoring is a component of any strategy and that GPs' training and professional development includes experience in psycho-geriatric medicine.

People may be reluctant to seek help from social care and any consequent means-testing, which would need to be addressed in an information and awareness campaign.

The view of the Hampshire Health Overview and Scrutiny Committee is that account should be taken of the impact of decisions by NICE about the prescribing of drugs for dementia which do not seem to support early treatment of the condition. Where will the strategy address this issue?

A joint Hampshire commissioning strategy for older people's mental health has been developed and implementation is starting. We will build on the involvement work undertaken with the local Alzheimer's Society to inform development of the strategy and will continue to include the voice and experience of the person who uses services and their carer / family in the implementation process.

An early local priority is development of a training strategy for all staff groups and a project manager for training is being jointly funded to take this forward across health and social care. Training and skills for staff have been incorporated into adult social service plans.

Health Overview and Scrutiny Committees are in a good position to monitor and hold to account statutory organisations if the strategy provides clear, measurable expectations for health and social care agencies, which are capable of being scrutinised.

There is scant mention in the consultation document of GPs and the part that primary care could play in early diagnosis and intervention services. This is a priority for attention, as GPs and primary care are crucial to continuing and improved quality care throughout the dementia pathway.

There may need to be clarity on the use of the term "early diagnosis and intervention" for a broad professional and lay audience. If it means some form of health screening for early dementia, then there must be some treatment options available to modify disease progression, otherwise it is difficult to see how this would succeed. If "early diagnosis and intervention" is about information, education and support for carers / relatives and people with dementia, so that at the point in disease progression that they wish to have help they know what is available and who to turn to, then that is to be welcomed and the intention made explicit . This chapter appears to be full of aspiration but short on evidence, which perhaps means there is little or no evidence base for 'early intervention' in the scientific sense.

Does an early diagnosis and intervention service need to be sited in specialist mental health secondary services? A primary care / community or third sector led service would be more likely to succeed in securing GP engagement. There is a need to explore and test options for the sort of tier 2 services that could be provided, asking whether it is necessary to have a consultant to diagnose dementia and whether specialist investigations are needed at this stage. One benefit of looking at different options is that this would allow CMHTs and psychiatrists to deal with the more complex cases, of which there are many.

There is a risk that GPs will simply refer more to already overstretched specialist mental health teams, so it is important to develop a strategy for an early diagnosis service that involves primary care and community services. This needs further dialogue with all stakeholders both nationally and locally.

The Croydon memory service model cited in the consultation document appears to have a secondary care bias and the benefits of engaging primary care have not been fully presented. Whilst the clinical and health economic case provided in Appendix 4 is a welcome example of an approach to developing dementia services and of an economic model that identifies savings to society as a whole, focusing on avoiding unnecessary admissions to residential care, caution is needed. Hampshire PCT and Hampshire Adult Services have undertaken a preliminary financial assessment of the business case for this service model and the main messages from this are:

- There is a lack of clarity about how the costs and benefits throughout the 10 year period are allocated between Health and Adult Social Care Services and how this will be reflected in the funding for the two organisations.

- Similarly there is no calculation as to the level of health and social care and support saving that might be accrued through early diagnosis.

- There is no guidance as to the methodology that will be employed to show that the strategy has had the desired impact, i.e. reducing residential care and how the impact can be separated from the myriad of other factors affecting the target population.

The Hampshire preliminary financial assessment of the clinical and health economic case for early intervention and diagnosis in dementia (Appendix 4) is included in full as an attachment to this response. We look forward to opportunities to look at this jointly and would be happy to contribute to further iterations of the business case, if that is helpful.

We also suggest that there is more emphasis on the part that universal services can play in supporting an individual and their carer / family to maintain independence and accessing advice, information and support services in the wider community.

In planning an early intervention and diagnosis service and to secure the positive engagement of GPs, account must be taken of their expressed reluctance to provide early diagnosis and intervention and a strong message `sold' to them about the value of this approach; also making it easy and not costly for them to do. There is the potential to use current levers and incentives within the system, e.g. a Local Enhanced Service for dementia care, validation and mapping of practice registers against prevalence, use of QoF points / targets, which would demonstrate to primary care that dementia matters.

There is a possible gulf of perception between primary and secondary care doctors and nurses and these cultural and organisational development issues need to be recognised and taken into account - nationally and locally. There are many parallels in other service areas and we should look to them to learn about what works.

In order to encourage early referral, an early intervention and diagnosis service would receive a range of referrals and provide information for the `worried well' plus advice, sign-posting and strategies to enable early preparation and to slow disease progression and minimise its impact.

A robust assessment process and has a part to play in preventing crises and preventing unnecessary hospital admissions.

The involvement of social care professionals in an early intervention service could be made clearer, linked to training and development of skills and their contribution to assessment and provision of information.

The development and / or facilitation of carer support groups, which could provide practical information sessions to support the `free' care provided by families and friends at day centres.

It would be helpful to explore a `single point of access' for professionals, patients and carers to signpost and support appropriately for potential access to specialist care, and for re-assessment or advice at critical points as the disease progresses.

Addressing the needs of deaf people with dementia by ensuring that a sign language interpreter is present during assessment, as few clinicians have this skill or have a full appreciation of deaf issues. The same attention needs to be applied to meeting the needs of other minority groups.

There needs to be further exploration and testing of all the options; what is important is that whoever does this is trained and recognised as such within the system. See comments above.

GPs could be supported to make a diagnosis of dementia with clear guidelines (although the current evidence around the effect of guidelines remains weak). Assessments such as the MME score could be done in GP surgeries, as well as basic tests and health promotion with a clear pathway leading into secondary care when necessary. The support of an experienced dementia worker could complement primary care skills. This would be a similar model to the service in palliative care, where a specialist facilitates palliative care in the home by working in partnership with the GPs and community nurses. Specialist doctor input could be provided by GPwSI or consultants acting in an advisory and supportive role.

We need to be mindful that individuals and their carers / families may be themselves reluctant to receive a diagnosis.

If there is some form of early diagnosis service that is primary / community based, then this would be open-referral: Adult Services, community nurses and individuals / their families and carers could self refer.

There needs to be a focus on outcomes for this function. A dementia care advisor-like role would operate easily in primary / community settings, in a similar way to other care co-ordination roles being undertaken in the community, e.g. for long-term conditions and for end of life care. Alignment with other case management roles in the community would mean that dementia care is not considered in isolation from the wider picture of care in community settings.

Hampshire Adult Services and Hampshire PCT will build the recommendations and guidance in the national dementia strategy into the local joint Hampshire strategy for commissioning older people's mental health services, in particular into service level agreements and contracting with providers focussed on outcomes. Users of services and their carers / relatives will be involved in monitoring services.

We will use every opportunity to raise awareness about dementia with Health and Adult Services staff, e.g. in staff appraisals, in order to mainstream learning and knowledge about dementia.

If an appropriate framework and standards are produced, Health Overview and Scrutiny Committees would have a key role in helping to monitor care delivered against the framework on the basis of reported experience of people with dementia and carers / families about how the system works for them.

A joint Hampshire commissioning strategy for older people's mental health has been developed and implementation is starting. Not surprisingly, there is a great deal of consistency between this and the national dementia strategy consultation document. Therefore we welcome a focus on:

- General hospital acute care

- Access to intermediate care

- Person-centred day care opportunities

- Flexible respite / short break options.

There is a need for baseline information and criteria to measure and evidence improvement.

Personalisation is referenced, e.g. page 44, however the impact that this will have on individuals and their families who may request personal budgets needs much more thought and consideration in the strategy. Will people with dementia be able to get personal budgets? The introduction of the personalisation agenda needs to ensure the active inclusion of people with dementia and explicit awareness and action to overcome the barriers to their inclusion.

In the early stages of dementia people will have capacity; we will need to consider what safeguards are needed as their condition changes over time. This is particularly pertinent in the context of the anxiety and fear about dementia that can be felt by public and carers / family.

The consultation mentions people with dementia having personalised social activity, but excludes personalised care; why should they be 'allowed' one and apparently 'denied' another?

The focus needs to be on assuring continuity of robust case management throughout the care pathway to maintain independence and avoid unnecessary admissions, working collaboratively with other health and social care co-ordination roles being undertaken in the community, e.g. for long-term conditions and for end of life care. There are opportunities for reviewing and aligning current resources so that they are efficient and appropriate, particularly as dementia is a co-morbidity in so many instances. It also means that dementia care is not considered in isolation from the wider picture of care in community settings,

End of life care is mentioned, e.g. within the `vision' outlined on page 24, however it needs greater attention within the strategy. End of life care for people with dementia is an essential part of improved quality of care in general hospital, at home and in care homes. Whilst the national End of Life Care Strategy is mentioned in terms of the wider policy context, there is a risk that the complex and different end of life care needs of people with dementia could be overlooked and `fall between two stools'. (Unfortunately, experience has shown how this can happen when OPMH services are not explicitly included within policy / guidelines.) There is learning available on palliative and end of life care for people with dementia, specifically the dementia project managed by the National Council for Palliative Care.

Housing is referenced, however this could be strengthened. There are significant housing developments planned for the South East and the opportunities afforded through Lifetime Homes need to be capitalised upon for people with dementia. (It would be interesting to see how many responses from District and Borough Councils are received to this consultation.)

Linking an in-reach and out-reach multi-professional services for care homes with other community based services designed for care of people with long term conditions.

Presumably the strategy will recommend tools, such as dementia care mapping, that can be used to assess the quality and environment of care provided.

Maximise the opportunities and ensure coherence for acute and secondary care consultants' and other professionals who input to the community.

Addressing the needs of deaf people with dementia, by having carers who can communicate in sign language, able both to monitor their condition and provide social interaction and stimulation. The same attention needs to be applied to other minority groups.

Training for home carers and agency staff is mentioned, however the market will need to embrace Personal Assistants, who are likely to be untrained and unregulated. In this scenario, the Local Authority will have a place shaping and leadership role in influencing, stimulating and developing the market rather than direct purchasing - a continuum of interventions: from offering subsidised training as part of market management to allowing the market self-regulation.

Appropriate and affordable services would need to be available. Care co-ordinators should be in a position to explain to patients and their carers what services are available and appropriate, and to help facilitate wise use of resources. In addition supporting information about such services or a regularly updated directory should be made accessible on paper and via a website.

Hampshire Adult Services and Hampshire PCT will build the recommendations and guidance in the national dementia strategy into the local joint Hampshire strategy for commissioning older people's mental health services, in particular into service level agreements and contracting with providers focussed on outcomes. Users of services and their carers / relatives will be involved in monitoring services.

The Hampshire Health Overview and Scrutiny Committee should be in a position to monitor commissioners and providers against a national framework, if there are clear standards and expectations of these bodies.

Hampshire PCT recognises the comments of the Hampshire Health Overview and Scrutiny Committee and would prefer to set its own deliverables and monitor those via the Hampshire Health Overview and Scrutiny Committee.

All outcomes and recommendations need to be realistic and realisable.

We welcome the aims to support implementation and develop a coherent research strategy for dementia care, which needs be truly multi-disciplinary and multi-sectoral to capture all the opportunities for improving services and health gains.

Will there be a commitment to support the costs of research? Also, is it possible to ensure that the experience of a person with dementia and the carer is required to support or test research and that progress is not impeded unnecessarily by other legislation around, for example, confidentiality.

There are areas where Hampshire would welcome further national and strategic direction to support local implementation of its joint commissioning strategy:

- Priority: assurance that dementia will continue to be a priority nationally and that resources will be a national concern, particularly in light of the demographic pressures which will have a fundamental impact.

- Resources: it would help to have some indication of the parameters and expectations for future spend on care and support and some benchmarking tools, for example, a narrative case example describing progression of the illness over time matched against an indicative spend for each element of care and support provision; this would need to acknowledge the different market conditions / forces entering the personalisation agenda. It is not easy to understand what is spent on dementia services and where.

- Performance indicators: further development of PIs that are joined up across health and social care and that reflect critical areas for outcomes / performance; in particular taking account of the anticipated changes in people's expectations for a different type of service that is responsive and reflects choice.

- Metrics: our aim is to include metrics for all parts of the pathway; there needs to be an evidence base. We welcome the forthcoming evidence and metrics about acute services signalled in the consultation document.

- Support with engaging and influencing GPs at a strategic, influencing level through professional bodies, as both providers and commissioners of care; how do we maximise the opportunities of the QOF?

- Learning and networking.

- Evidence base.

- Outcomes procurement and commissioning.

- Continuing leadership and direction around the dignity agenda.

- Clinical leadership on a broad basis - not only specialist services.

In view of some common issues for dementia and other strategies / NSFs, where older people are the main focus, these need to a be scanned for suggested solutions and developments that are common, to explore the potential for synergies and reducing redundancy, for example the potential for dovetailing with OOH strategies.

Good analysis of the inter-dependencies, the need for defined and well formed patient care pathways and setting the strategy in the wider context of community and other care themes provides some indication of where the early priorities lie.

We suggest:

- Education and awareness raising for staff.

- Working to engage GPs and other mainstream clinicians and staff in all sectors.

- Improving the experience of people with dementia on care pathways in and around hospitals, both systems and staff.

- Need to beware initiating public awareness and information too far in advance of support for staff.

Clearly there will need to be a lot of groundwork and preparation to be done up-front. Progress cannot wait for the promise of extra funding.

Hampshire Adult Services and Hampshire PCT will build the recommendations and guidance in the national dementia strategy into the local joint Hampshire strategy for commissioning older people's mental health services.

The Hampshire Health Overview and Scrutiny Committee could help to raise the profile of dementia care and encourage good co-ordination of care among providers and commissioners, however there needs to be baseline information, improvement criteria, timescales, etc. against which progress can be monitored. If the strategy is to be taken as the opposite of `prescriptive', with no force or practical incentives within the system, then there may be little any organisation can do to encourage or support better dementia care.

Hampshire PCT recognises the comments of the Hampshire Health Overview and Scrutiny Committee and would prefer to set its own deliverables and monitor those via the Hampshire Health Overview and Scrutiny Committee.

There is the issue that people with Down's Syndrome are susceptible to early onset dementia and services designed to meet the needs of older people may not necessarily meet the needs of people who are much younger, or conversely they may, but age limitations prevent this.

Also, if someone with a learning disability has behaviour that manifests itself as challenging, they are just seen to have challenging behaviour, whereas this could be the early signs of dementia, particularly in a group of people where prevalence is higher. Issues such as confusion or other factors may lead a person to challenge as well, which again can be misinterpreted as "challenging behaviour" when it could be a sign or symptom of dementia.

We need to be asking how responsive are health and social care services and how dementia is picked up in this group of people.

See comments above about the needs of people who use deaf sign language and other minority groups.

In general, advice should be available to all co-ordinators of care should an individual / carer have issues of concern. Health and social care providers should have access to specialist advice or guidance, if required, for the delivery of all care, including dementia care. Information developed or provided should reflect that such advice has been sought and taken.

Training should include `what to do or ask' modules for known considerations on the basis of local or national experience.

High level joint messages:

Hampshire PCT, Hampshire County Council Adult Services and Hampshire Health Overview and Scrutiny Committee warmly welcome the national dementia strategy.

A joint Hampshire commissioning strategy for older people's mental health has been developed and implementation is starting. There are consistent messages between the Hampshire and the national strategies about demographic pressures, areas for improving services, engagement with people with dementia and their carers / families and making best use of existing resources.

We welcome the intention for the national dementia strategy to not be prescriptive, rather "a digest of possible priorities and actions" for commissioners (page 10). However, this is balanced by the need for a transparent, measurable framework for direction so that progress from local baselines to agreed outcomes can be mapped.

Is there a somewhat patronising tone to the document in how it talks about what we will `do to / for' people with dementia?

Hampshire is one of the participating sites in the national `Care Closer to Home' for older people's mental health learning initiative sponsored by CSIP and ADASS.

We would be pleased to be involved in supporting further development of the national dementia strategy through sharing learning and good practice with colleagues - there will be much to gain from each other.

The NHS Constitution - responses to questions

Status of Constitution

Comments

Q.1: Should all NHS bodies and NHS-funded organisations be obliged by law to take account of the NHS constitution?

Very few rights in the Constitution appear to have sufficient force to make such an `obligation' meaningful. Therefore there is little point in them having to take account of it for legal purposes.

Q.2: Should legislation require the Secretary of State for Health to renew the constitution every 10 years?

The Constitution should be renewed or amended as and when changes occur in health policy or legislation

Q.3: Should the Handbook to the NHS Constitution be renewed every 3 years?

Perhaps renewal of the handbook should be co-ordinated with renewal or updating of the Constitution and relevant changes in NHS or related structures.

Purpose and Principles of the NHS

Q.4: Are the statement of purpose and the set of principles right?

Are there any principles that should be added?

The principles are right. The statement of purpose, however, it is not clear what the statement of purpose is intended to convey.

Suggest no further principles.

Patients and the Public

No consultation questions in this section

Patient/Public responsibilities

Q.5: Is the list of public and patients' rights clearly explained and accessible to all sections of the community?

The `rights' are often not well developed and could be confusing to members of the public.

Q.6: Is it useful to bring together all of the key public and patients' rights and pledges?

Not particularly - too many to be taken in at once. Quite a number of `rights' appear to be `weakened' and unconvincing. The so called pledges are also less than convincing - expressed as things to `strive for'.

Q.7: Do you agree with a new legal right to choice about your NHS care?

Reasonable choice can be helpful, not least in expediting care sometimes. In practice do most GPs think beyond the local district general hospital? Patients have had the right of choice for some years.

Extending choice should be a natural outcome as the service develops. However some choices are apparently not permissible, such as paying for elements of care under penalty of losing the NHS components altogether.

Q.8: Is this list of pledges right? Which are most helpful?

The lack of clear commitment to either `rights' or pledges makes it difficult to determine how `helpful' each is. It is also not clear how one is supposed to rank different types of pledges with others.

Q.9: Are the responsibilities and expectations of patients and the public appropriate? Which are the most helpful?

The expectations of the public appear reasonable, but why ask for different kinds of responsibilities to be ranked?

Q.10: Are the mechanisms for complaint and redress clear and sufficient?

The mechanisms were more clearly expressed in the Patients Charter.

Staff

Q.11. Is the list of staff pledges right? Which are most helpful?

The pledges may be right in the context of recruitment, employment contract, and ethos, but whether the NHS is likely to be keen on staff identifying truth and errors and reporting them, for example, is an open question.

Q.12. Is it useful for the Constitution to set out staff responsibilities? Is the description right?

Not obvious that these belong in a Constitution, but then it is not clear what purpose it is actually serving, given its defensive tone.

Accountability

Q.13. Do you support the proposal to publish a separate statement of accountability? How can we make this most helpful?

If this raises the profile of accountability and that it is consistent with structures and guidance already in existence. In view of the increasing trend towards partnership working and accountability within those contexts, any such statement would have to ensure it is fit for purpose in the new context.

A separate statement that provides an adequate level of detail would be preferable to introducing too much detail in the Constitution, although it is not clear this balance is right as it stands.

NHS Values

Q.14. Should values be included in the Constitution?

Values are extremely important, however it may be sufficient to acknowledge support in the Constitution for values and human rights expressed better elsewhere.