CALL FOR WRITTEN EVIDENCE ON THE FINANCIAL MEMORANDUMS TO THE PALLIATIVE CARE (SCOTLAND) BILL

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1 Lothian NHS Board Waverley Gate 2-4 Waterloo Place Edinburgh EH1 3EG Telephone Fax PAL43 Mr Mark Aggleton Health Quality Development Manager Scottish Government Quality Division, Ground East Rear St Andrews House, Regent Road EDINBURGH EH1 3DG Date 30 September 2010 Your Ref Our Ref Enquiries to: Peter McLoughlin Extension Direct Line Dear Mark, CALL FOR WRITTEN EVIDENCE ON THE FINANCIAL MEMORANDUMS TO THE PALLIATIVE CARE (SCOTLAND) BILL With reference to Derek Feeley s of 13 th July 2010 to the Chief Executive and Director of Finance, I write to provide the response from NHS Lothian. Our response is presented below for each of the questions outlined in the questionnaire from the Finance Committee (as attached in the letter from Jennifer Bell, Committee Assistant, to Dr Woods on 5 th July 2010). Consultation 1. Did you take part in the consultation exercise for the Bill, if applicable, and if so did you comment on the financial assumptions made? Did you take part in the consultation exercise for the Bill? Yes, NHS Lothian submitted a full response to the consultation exercise. Our response was discussed and agreed by all members of the Lothian palliative Care Managed Clinical Network. Did you comment on the financial assumptions made? In our response we highlighted the need for funding to support the introduction of practical tools such as the Liverpool Care Pathway (LCP) for the Dying Patient. Such schemes require significant level of support to set-up and make effective in practice. Implementation of the LCP, or equivalent scheme, is required across hospital and community services to achieve a more consistent and higher quality level of end-of-life care. Increasingly applied end-of-life care pathways are also available for implementation in social care settings such as care homes. Our response also flagged the need for a development fund to support the service development, testing and full implementation of schemes aimed at improving non-cancer Headquarters Waverley Gate, 2-4 Waterloo Place, Edinburgh EH1 3EG Chair Dr Charles J Winstanley Chief Executive Professor James J Barbour O.B.E. Lothian NHS Board is the common name of Lothian Health Board

2 related palliative and end-of-life care. In Lothian approximately 65% of all deaths per annum (almost 5000) are neither cancer deaths (25%, circa 1900), or sudden / accidental / other deaths (circa 10%, 750). Whilst many of these 5000 non-cancer deaths per annum will be adequately supported by generalists, some would benefit from a more tailored or focussed approach to palliative and end-of-life care managed either by generalists or as shared-care across primary and secondary care. Some would benefit from specialist palliative and end-of-life care input. Given the significant numbers, the early stage we are at in developing access and service responses in specialist palliative care, and the significant education and training requirement still to be completed, achieving consistently good-quality care will take further investment (over and above the central investment already made in developing support tools such as epcs, DNAcpR, ACP etc). 2. Do you believe your comments on the financial assumptions have been accurately reflected in the Financial Memorandum? No. The financial memorandum broadly assumes that the development costs associated with the national Living & Dying Well programme will adequately cover most costs. Whilst the uncertainties of need, eligibility, and current service provision (palliative care levels being provided) are understood, with an estimated 5000 non-cancer deaths per annum in Lothian that could potentially benefit from improved palliative care there are clearly service development and support costs that go beyond the reach of the current Living & Dying Well programme. The UK government has established a development fund and hospice capital fund to support service development, redesign and improvement to facilities, presumably in recognition of the costs associated with developing service provision for non-cancer to match the level of palliative and end-of-life care provided for cancer. Developing, testing and implementing specific models for non-cancer palliative and end-oflife care, developing care in care homes and other social care provision, shifting the balance of care further to community care, and ensuring the maintenance of adequate cancer related palliative and end-of-life care are examples of service development, redesign and capacity issues which have a greater cost consequence than is assumed in the current memorandum. In NHS Lothian we are focussed on improving productivity and value for money from all of our services and, in this context, are taking forward the extension of palliative and end-of-life care to non-cancer conditions. We anticipate that further improvement can be made by use of generic schemes already developed and in place (epcs for example), and through service redesign within existing resources. However as approaches and models are largely in development and untested, improving non-cancer palliative and end-of-life care to the same level of quality as cancer care clearly carries financial uncertainty and risk.

3 3. Did you have sufficient time to contribute to the consultation exercise? Costs Yes. 4. If the Bill has any financial implications for your organisation, do you believe that these have been accurately reflected in the Financial Memorandum? If not, please provide details. As outlined in question 2 above, service costs in non-cancer palliative and end-of-life care in particular may be underestimated. We would anticipate that if the Bill is passed, and Scottish Ministers devolve a duty to Health Boards to provide comprehensive palliative and end-of-life care to all (patients and their family members), the public focus, potential legal challenge to Boards, and expectations will increase significantly. Set against this the difficulties in separating out aspects of palliative and end of-life care activity already routinely provided by generalists, and the unknown cost / benefit analysis, and evidence base, around much of non-cancer palliative care. The local costs of service activity monitoring of delivery against such a duty, and the potential costs of participating in legal challenges are in our view higher than currently assumed. Aside from basic local activity coding and monitoring that would be necessary at service operational level, the costs associated with ministerial annual reporting to the level specified are significantly underestimated. NHS Boards would effectively be required to establish major administrative systems to capture the data quoted. The assumption that QOF (Palliative Care), GSF, LCP, SPARRA, SSA and IORN data would cover the reporting obligation given to Boards is incorrect. Far from just collation costs, Boards would be required to establish new systems to co-ordinate data and to establish extensive new data reporting of new data fields, and introduce waiting times systems to ascertain time between diagnosis and assessment, and assessment to 1 st definitive palliative care provision, etc. Additionally the data in the data-sets listed above are inconsistently recorded across Scotland, may be time limited, or based on point rather than period prevalence (such as QOF data for palliative care) and therefore themselves would need data quality improvement. Additionally, the Information and Statistics Division of the NHS in Scotland would incur significant administration costs. The costs of interpretation and performance management at local level are not considered.

4 5. Are you content that your organisation can meet the financial costs associated with the Bill? If not, how do you think these costs should be met? No. The costs of monitoring and reporting could not be met without significantly increased administrative and development funding to support this. Greater central funding support would be required. The costs of increased community capacity to provide community alternatives to hospital end-of-life care, based on acceptance of care planning based on patients preference, are not accounted for. The cost to carers associated with helping to manage a home death based on patient preference is also not assessed. Opportunity does exist to invest-to-save by taking new approaches to community based end-of-life care. Financial savings locally however are likely to be manifest in increased productivity from hospital resources (increase in acute care rather than palliative or end-oflife care) which are not immediately releasable to community palliative and end-of-life care schemes. Central investment for service redesign would allow development and evaluation against expected cost savings and improved experience. 6. Does the Financial Memorandum accurately reflect the margins of uncertainty associated with the estimates and the timescales over which such costs would be expected to arise? Wider Issues We agree with the reasons for uncertainty as stated on page 10 of the explanatory notes. We would add the need to manage the risk of increased public expectation based on a specific duty to provide palliative and end-of-life care as specified. This is likely to increase demand for specific assessment, and to increase requests for specialist referral, assessment and treatment. 7. If the Bill is part of a wider policy initiative, do you believe that these associated costs are accurately reflected in the Financial Memorandum? See response to question 2 above.

5 8. Do you believe that there may be future costs associated with the Bill, for example through subordinate legislation or more developed guidance? If so, is it possible to quantify these costs? The main issues to consider would be the cost of monitoring and reporting administration, increased complaints administration, and defending potential legal challenges at Health Board level. I hope that these comments are helpful. Kind Regards Yours sincerely pp Carol Potter SUSAN GOLDMSITH Director of Finance NHS Lothian