Response to the DH consultation on the NHS Next Stage Review


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Response to the DH consultation on the NHS Next Stage Review

  1. 1. Sue Ryder Care Submission to NHS Next Stage Review January 2008 1. About Sue Ryder Care Sue Ryder Care is a leading third sector provider of specialist palliative care and long term-neurological care in the UK. It operates hospices, neurological care centres, homecare and community based care services across the country. Its vision - ‘Care that liberates lives’ - means that the charity cares for all of a persons need be they physical, emotional, psychological or spiritual, and is dedicated to helping people get the best from their lives, living with chronic and terminal conditions and illnesses. Sue Ryder Care’s specialist palliative care services are based around consultant led inpatient units and comprise day hospice facilities, specialist community nurses, social work and bereavement services, which integrate with the NHS and other organisations, including oncology units, GPs and social services. Last year, its six hospices provided 1,800 episodes of in-patient care and 5,500 attendances at our day care hospice services. Its neurological care services provide specialised long term care and support for people with conditions including Multiple Sclerosis, Stroke, Parkinson’s Disease, Motor Neurone Disease, Huntington’s Disease, Brain Injury and Dementia, with most centres recognised as preferred providers of respite care by the MS Society. Admission is based on referral by NHS or Social Services and individual assessment by the charity. Its nine neurological centres provide care for over 400 people, with a further 3,750 people received care through our neurological day services. Sue Ryder Care homecare provides social support for people with a range of care needs in the community. The majority of the people the service cares for, often in partnership with other agencies, are adults with a high level of need, recognised following assessment by a social worker. Sue Ryder Care provides 12,000 hours of homecare every week through these services. Sue Ryder Care services are funded through a combination of statutory funding and voluntary donations. In order to provide these services, which provided over 4 million hours of care last year, the charity needs £60 million every year. There are over 370 Sue Ryder Care shops across the UK to help raise funds. 2. Overview Sue Ryder Care welcomes the opportunity to respond to this consultation, as it is important that the third sector is involved in any discussions for changes within the NHS. As part of the third sector which delivers services on behalf of the NHS, it is vital that Sue Ryder Care can share its valuable experience with NHS and the government in order to enable the appropriate development of services that meet needs.
  2. 2. As Sue Ryder Care is a leading provider of neurological care and palliative care, the response to this consultation will focus on the Long Term Conditions and End of Life Care policy areas. 3. Long Term Conditions 3.1 National Service Framework At present, one of the main barriers to providing long term neurological care is the lack of implementation of the National Service Framework for Long Term Conditions (NSF). Despite the positive content of the NSF and the benefits it would undoubtedly bring to the many people requiring long-term neurological care, the NSF does not contain any milestones for implementation and at present, there is no consistency across PCTs on prioritisation in implementation. From our recent research “Filling the Void: how real life health information builds better services”1, Sue Ryder Care surveyed Strategic Health Authorities and found that 42 per cent of them showed no evidence of having a NSF Implementation Team and that none of them were able to provide details of the proportion of people who had received an integrated assessment or personal care plan since the NSF was launched. This shows that the NSF is currently not being adopted with any real consistency, or, in some cases, even being adopted at all. There is also the issue of the lengthy deadline of 2015 for total implementation of the NSF which currently exists. As there are no set targets or allocated funding attached to the NSF, there is no incentive for PCTs to implement the NSF guidance at present. In the report, Sue Ryder Care recommended allocating ring-fenced funding through a national Neurological Care Plan to ensure that the framework is fully implemented for all patients who require long-term neurological care. We also recommended that a duty should be placed on commissioners to produce strategic plans detailing progress towards meeting established government guidelines, such as the NSF. 3.2 Use of data One of our main recommendations from our research “Filling the Void: how real life health information builds better services” called for better collection and use of data, particularly on people with neurological conditions in order to tackle the current information void that exists. Sue Ryder Care has called for the establishment of centralized neurological registries by condition to facilitate service planning and development, such as the ones currently in existence for cancer. Although plans were initially made to establish a minimum dataset for neurological conditions linked to the National Programme for IT, we understand that this has now been abandoned by the Department of Health. Sue Ryder Care believes that this would provide valuable information for commissioners and our Health Informatics Service would be interested in taking this project further. Sue Ryder Care are currently in the process of putting together a research proposal for funding to pursue this work. 3.3 Post-acute care One of the main issues surrounding the care of people with long term neurological conditions is what happens after treatment at a neuroscience facility. After treatment at a neuroscience facility, a person will potentially require care for the rest of their life. At present, there are not sufficient networks in place to ensure that once a person leaves a neuroscience facility, they receive the appropriate care in appropriate settings. This can mean that people do not receive the necessary care for their condition, with many examples of people with long-term neurological conditions being placed into inappropriate settings, such as care homes that are not properly equipped to meet their complex needs. For people with these conditions, it is vital 1
  3. 3. that their needs are met and either integrated into society where possible or to receive care in appropriate settings. It is also vital that people are offered choice in their care, particularly as at present, there are no defined care pathways for long term neurological care. In order for the NHS to be able provide 21st century care for people with neurological conditions, more investment should be made into the care pathway post-treatment to ensure that people receive the rehabilitation and care that is appropriate to their needs. 3.4 Role of the third sector In order to provide care for long term neurological conditions for the 21st century, it is vital that the NHS and the Government works with the third sector to find innovative solutions to delivering care. At present, innovation and development of best practice tends to originate at provider level, rather than commissioner level, and as a leading provider of long term neurological care, Sue Ryder Care has been at the forefront of developing innovative solutions for providing care. The current lack of certainty created by current commissioning means that there is a heightened financial risk of embarking on new programmes. As a result, third sector providers are forced to develop new services at their own risk due to an unstable commissioning environment, which can create a strong disincentive. The services provided by Sue Ryder Care are embedded in the communities in which they operate, allowing them to develop unique solutions to meet the needs of the community. Examples of this include our 5 Rs service offered at Sue Ryder Care – The Chantry in Ipswich. 5-Rs is a day service for people living with Multiple Sclerosis in the local community. The service offers a group of ten attendees a ten week programme to come together, get involved and benefit from a person-centred activity programme, to give practical help and assistance to meet their needs. Each week, different activities are offered, including yoga, reflexology, shiatsu, music and art therapies, based around five basic principles: Relax, Re-build, Re-energise, Re- integrate and Re-generate. Clinical specialists such as an MS nurse are also available to give helpful advice, as well as guest speakers on topics such as life changing therapy. By sharing information and examples of best practice, the NHS and the third sector can work together and improve standards by providing more efficient and effective levels of long term neurological care. 4. End of Life Care 4.1 Awareness of end of life care Sue Ryder Care welcomes the fact that end of life care is being specifically considered as a key policy area by the NHS Next Stage Review. This is a valuable opportunity to show that end of life care is part of the whole continuum of care. At present, end of life care is not widely discussed. This can lead to issues such as reluctance amongst the medical community to acknowledge that a person now needs end of life care, which can then result in delays in referring them for the appropriate care. In order to change the way that end of life care is viewed, general awareness needs to be raised about the innovative work that takes place within end of life care, such as Sue Ryder Care’s Palliative Initiatives in Neurological Care (PINC)2 programme. This could also feed into more open debate about end of life care, in order to change current public perceptions about this vital area of care. As it is fair to say that everyone is likely to need end of life care, it is important that as many people as possible are involved in deciding what kind of care they would like. 4.2 Funding issues 2
  4. 4. The main barrier to providing end of life care for Sue Ryder Care at present is the level of statutory funding received by the third sector. The funding situation that exists for palliative care is an issue on which Sue Ryder Care has been campaigning on for some time. In our “We Care: Who Pays?” campaign, we revealed that Sue Ryder Care currently subsidises PCTs by approximately £6 million each year due to the shortfall between what the state pays us for the palliative care we provide and the true cost of supplying the service. Using ACEVO’s model for Full Cost Recovery, which includes central costs that enable care services to operate, such as payroll, the figure would come to nearer £13 million. It has been estimated that across the third sector, which provides 80 per cent of palliative care, this equals an estimated £200 million of ‘free care’ the Government receives from the third sector. We have also called for tariff pricing based on a national model would be an important first step towards transparent and fair contracting for our services by the state. At present, palliative care is not included in the Payment by Results tariffs and there appears to be no immediate intentions from the government to set out appropriate tariffs for palliative care. The Government has repeatedly set out commitments towards full cost recovery, going back to the Cross-Cutting Review in 2002. The principles have been backed by a number of minister since then, but as of yet, it still has not been implemented, with the Charity Commission reporting that only 12 per cent of charities claim to receive full cost recovery all of the time3. Since then, although there has been acknowledgement that there is still a long way to go before full cost recovery is implemented across the third sector and that further progress must be made4, this has yet to be translated into any real change. Coupled with the lack of adherence to the principles of the Compact in funding statutory services in spite of continued government support for it as a mechanism, it seems that the government is failing to keep to its promises to improve the situation for the funding of palliative care. As it currently stands, the funding situation for palliative care is unsustainable for the third sector to continue as a major provider. A further issue that exists with funding for end of life care occurs when patients living in care homes require end of life care and move to end of life care centres. Sue Ryder Care has experienced when such patients begin to use its services and require us to purchase equipment specific to their needs, but cannot get the funding from PCTs. It is vital that people receive the same levels of care throughout their care pathway, regardless of where they are being treated, and that the funding covers that care. 4.3 Access to care At present, access to end of life care is largely dependent on where a person lives and what condition they have. The Sue Ryder Care report “Filling the Void: how real life health information builds better services” highlighted the current postcode lottery which exists in end of life care. It is vital that end of life care provision does not depend on the location of the patient and that standards of care are at an equally high standard across the country. It is also important to ensure that end of life care is accessible for all terminal diagnoses, not just for patients with cancer. At present, cancer accounts for a large proportion of patients receiving palliative care – it is estimated that there are approximately 300,000 people living with neurological conditions in the UK every 3 Stand and deliver: The future for charities providing public services¸ Charity Commission, February 2007 4 Partnership in Public Services: an action plan for third sector involvement, Office of the Third Sector, December 2006
  5. 5. year who do not have access to the palliative care they need.5 It is vital that everyone who needs palliative care is able to access it, regardless of diagnosis. A further issue also exists in terms of access to end of life care for ‘hidden’ populations, such as homeless people or travellers. At present, these groups are less likely to access end of life care than the rest of the population. It is vital that awareness of these groups and their end of life care needs are raised so that they can have the same access to care. In order to tackle the issues of access to end of life care, the issue of accurate data on end of life care needs and provision is vital, which is discussed in our next point. 4.4 Use of data As with our comments on Long Term Conditions, the issue of the use of appropriate data is also vital to enabling better standards of end of life care, as better collection and use of data surrounding palliative care would ensure that care was commissioned according to the needs of the population. This is a point Sue Ryder Care emphasised in its “Filling the Void: how real life health builds better services” research. At present, there is no clear picture on either what end of life care services currently exist or what need actually exists for these services. It was disappointing to learn recently that the Department of Health will not be collecting or assessing the baseline reviews of end of life care services carried out by PCTs. By removing any hard targets to carry out these reviews, PCTs and LAs are less likely to carry them out, meaning that there is still no true picture of the current levels of provision of end of life care services across the country. A national needs analysis of non-cancer diagnosis requiring palliative care would provide valuable information to allow for appropriate commissioning of end of life care. At present, this has not been taken up as a national project and would help to assess service need. Although the National Council for Palliative Care released their guide “Population-based Needs Assessment for End of Life Care”, as it is a comparative index, this does not provide details of what is currently provided and what further provision is needed. 4.5 Role of the third sector As with our comments on Long Term Conditions, in order to provide care for end of life care for the 21st century, it is vital that the NHS and the Government works with the third sector to find innovative solutions to delivering care. As a leading provider of palliative care, Sue Ryder Care has been at the forefront of developing innovative solutions for providing care, such as the recent work developing our PINC programme. By sharing information and examples of best practice, the NHS and the third sector can work together and improve standards by providing more efficient and effective levels of end of life care. “Filling the Void: how real life health information builds better services” is available on the Sue Ryder Care website – please click here to access it. For further information on any elements of this submission please contact Caroline Weston, Policy and Public Affairs Officer at Sue Ryder Care, on 020 7400 0445 or email 5 National Survey: Neurological Conditions, National Council for Palliative Care, September 2006