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Dear Further to your request under the Freedom of Information Act 2000, please find attached your completed questionnaire. Please note that in line with section 12.1 of the Freedom of Information Act (exemption where cost of compliance exceeds the appropriate limit), we have been unable to provide some answers (questions 2, 7, 9d and 11). We have provided answers to all other questions within the time limit. I trust you find this information useful. Please do not hesitate to contact me if you require any further assistance. I have attached a copy of the Trust s leaflet on how we deal with Freedom of Information requests, should you require any additional information about the process. Please note that any re-use of this information will be subject to the Re-use of Public sector Information regulations. Please contact the Freedom of Information Officer for further information. If you are unhappy about the response you have received your first line of action should be to write and request the Trust to undertake an internal review of your application. A senior member of staff, who was not involved with your initial application, will undertake this review. If after this process you are still not satisfied with the response you receive from the Trust you can complain to the Information Commissioner at the following address: Information Commissioner Wycliffe House Water Lane Wilmslow Cheshire SK9 5AF Freedom of Information Request NHS Continuing Healthcare Under the The Freedom of Information Act, can you please provide the following information? 1. Where the National Framework Decision Support Tool (DST) is used to determine if patients have a primary health need, can you please indicate what overall threshold domain scores are being used by your organisation to determine eligibility for NHS Continuing Healthcare and how is this aligned with DH guidance? E.g. is your organisation only funding those patients that have a level of priority need in any one of the four domains that carry this level, or a total of two or more incidences of identified severe needs across all care domains? A. Eligibility is determined using the Department of Health Decision Support Tool. The totality of a patient s health needs and the effects of the interaction of those needs are also considered. As is required by the Decision Support Tool, clinical judgement is applied, so the assessment is not purely based on the assessed scores. As such, NHS Milton Keynes & Northamptonshire CHC team does not limit its determination of eligibility to only those patients who have a Priority score in any given domain or two Severe scores. Each case is looked at on an individual basis. 2. DH guidance indicates that if there is: one domain recorded as severe, together with needs in a number of other care domains, or a number of domains with high and/or moderate needs, this may well also indicate a primary health need. In these cases, the overall need, the interactions between needs in different care domains, and the evidence from risk assessments should be taken into account in deciding whether a recommendation of eligibility for continuing healthcare should be made Can you please indicate how many patients are receiving NHS Continuing Healthcare funding where they only have: one domain

recorded as severe, together with needs in a number of other domains, or a number of domains with high and/moderate needs? A. As the CHC Service does not limit the decision on eligibility to just using the scores in the domains, it does not maintain a database with this information. As such, to provide an answer, the Service would have to undertake a manual audit of all current cases. Based on an average case load of approximately 1000 patients, this would equate to 80 hours to obtain (5 mins per case), so we are unable to answer this question within the 18 hours permitted. 3. DH guidance indicates that The judgement whether someone has primary health need must be based on what the evidence indicates about the nature and/or complexity and or/intensity and/or unpredictability of the individual s needs and the DST is intended to assist in this process. Figure 1 in the Decision Support Tool for NHS Continuing Healthcare (July 2009) indicates increasing intensity/unpredictability and complexity/intensity in their own right. Can you please indicate how your organisation uses the output of the DST in relation to these aspects of care in determining whether a patient has health and/or social needs and is recommended to receive NHS Continuing Healthcare funding? A. NHS Milton Keynes & Northamptonshire use the Decision Support Tool to consider the totality of a patient s needs, using the individual domains and not each domain in isolation. We also use the interaction between domains and how they impact on each of the needs to identify when the need is Health or Social Care, along with the inter-relation of those needs. 4. Can you please indicate what reliance/weighting your organisation places on the output of the DST, particularly in relation to patients that may not satisfy the criteria of having a priority need in one of the four domains or two or more severe needs across all care domains in determining NHS Continuing Healthcare funding? A. NHS Milton Keynes & Northamptonshire very much rely on the recommendation made by the MDT and the information provided in the DST, following the Department of Health National Framework for Continuing Healthcare guidelines. As previously explained, the CHC Service does not limit its determination of eligibility on an individual have a score or Priority or two scores of Severe. 5. Where a patient suffers from multiple health conditions which result directly in health needs, but also has other care needs as a direct consequence of these conditions (such as washing, dressing, feeding in the case of dementia and other patients groups), are these latter care needs defined by your organisation as social needs or health needs? A. Decisions are based upon a patient s needs, irrespective of their condition/diagnosis. Each domain is looked at individually. Washing dressing etc, are defined as Social Care needs. If a patient has been found eligible for 100% Continuing Healthcare, then the CHC Service would fund both the Health and Social Care needs. 6. In the case of dementia patients, where care needs are directly related to the health condition, how does you organisation assess the needs of these patients as being health or social care? A. Decisions are based on a patient s needs, irrespective of their condition/diagnosis. Patients present differently with the same diagnosis. The assessment process is very person centred and needs led. 7. How many dementia patients (vascular/alzheimer s etc) within your organisations catchment area receive NHS Continuing Healthcare funding? A. Given that eligibility is not determined based on diagnosis, this information is not captured on the CHC Service s database, so we would have to review each patient s records to check their diagnosis. We are able to restrict the size of the records we review to approximately 300 patients, which would equate to 20 hours of work to obtain the information you require (4 mins per case). 8. If your organisation uses a panel to recommend NHS Continuing Healthcare funding, can you please indicate whether recommendations for eligibility are made indicated to patients prior to MDT s having obtained evidence from patient records? A. No determination of eligibility is made before the MDT sits to assess an individual. Patients and/or their representatives are part of our MDT process, so are able to contribute to the assessment. At the end of the MDT a recommendation is made by the professionals, which is relayed to the individual or their family. The case is then referred to the Continuing Healthcare Panel for ratification. The individual or their representative are informed of the outcome of the panel in writing.

9. Can you please indicate, on a yearly basis since the introduction of the DH DST guidance, the: Please note: The figures below are estimated and not 100% accurate and is the only data available these have been obtained from our in house data base and do not include the number of patients, who are in the end stage of life, who received Fast Track funding in the given periods: a. number of patients within your catchment area that have been referred to your organisation for a detailed health assessment by GP or other healthcare/social care professional? A. This has been interpreted as checklists received: All checklist forms received from all referral sources: The checklist form is our method of referral and request for assessment figures below. Not all referral requests go onto assessment these are indicated in the screened out figure below October 2009 December 2009 = 331 of which 153 were screened out January 2010 December 2010 = 1781 of which 671 were screened out January 2011 December 2011 = 1562 of which 835 were screened out January 2012 October 2012 = 1200 of which 331 were screened out b. the number of patients within your catchment area that have received recommendations for eligibility for NHS continuing care funding? A.Based on our process and terminology used we have interpreted that October 2009 December 2009 = 190 January 2010 December 2010 = 505 January 2011 December 2011 = 481 January 2012 October 2012 = 327 c. the number of patients within your catchment area that have received full NHS Continuing Healthcare funding? A. The figures below are estimated and not 100% accurate and is the only data available these have been obtained from our in house data base and do not include the number of patients, who are in the end stage of life, who received Fast Track funding in the given periods: October 2009 December 2009 = 190 January 2010 December 2010 = 505 January 2011 December 2011 = 481 January 2012 October 2012 = 327 d. the typical threshold DST domain scores for those patients receiving NHS Continuing Healthcare funding? A. We would need to check each patient s records estimated time would be 80 hours e. the mean spend on patients receiving NHS Continuing Healthcare? A. Average Package cost: October 2009 December 2009 = 693.80 January 2010 December 2010 = 863.54 January 2011 December 2011 = 932.97 January 2012 October 2012 = 849.96 10. Can you please indicate how many appeals following full assessment decisions are requested and the number that are successful? A. Since the commencement of our data collection, 21/10/10 and up to 30/09/12, NHS Milton Keynes and Northamptonshire has received 152 Appeals, 24 of which were overturned,(2 nd MDT took place), 3 are current and 9 are pending.

11. DH policy promotes the importance of using multidisciplinary teams in reaching a decision as to eligibility. Can you please indicate how many recommendations involve MDT s where only the minimum number of healthcare professionals are present at the MDT meeting? A. We would need to check every DST to see who attended the MDT as this is not fully recorded on our database. A minimum would be 1 x Health representative, 1 Social Care and patient/and or their representative and any other available professional involved in the patient s care. The MDT would go ahead with a minimum of 1 Health and 1 Social Care representative. For accurate information, we anticipate that this would take 80 hours to obtain. 12. Can you please provide the typical composition of any panel used to make decisions regarding eligibility by MDT? A. Typical composition is Panel Chair who is a qualified Clinician. Social Care representative and a Panel Co-Coordinator/administrator support. 13. Can you please outline how your appeals process operates, including how it addresses the need for independence in any re-assessment? For example, if your organisation uses a neighbouring CHC team within the same SHA region, how do you ensure that such arrangements provide independence? A. Following the initial decision of not eligible for CHC we request that the intention to appeal is put in writing asking for the decision to be reconsidered. It may occasionally be necessary to repeat the MDT meeting with a different Nurse Assessor and Care Manager. In this event, the outcome of the second MDT would be reviewed by a Panel that did not include anyone involved with the previous assessment. Alternatively we may ask another PCT in the East Midlands to carry out a formal peer review who will consider the case independently and neither the Milton Keynes & Northamptonshire CHC service or patient and/or representatives will be involved until we are informed of the outcome. Notes from the Peer Review Panel will be sent along with a letter detailing the outcome. If the patient and/or representative are unhappy with the outcome of the Appeal they can ask in writing to the Head of Legal Services at NHS East Midlands. 14. Can you please indicate the number of healthcare personnel directly involved in NHS Continuing Healthcare Full Assessments within your organisation and the overall cost of your CHC team? A. As at 1 st November 2012, there are currently 17 Nurse Assessors who are directly involved in full assessments and 5 Senior Nurses involved with Panels and quality assurance. Overall cost of the CHC team, including administrative staff, procurement specialists and management is 1,876,908 for 2012-2013. 15. DH guidance indicates that where patients are not necessarily eligible for funding under the NHS Continuing Healthcare policy, they may still be eligible for funding of respite care. Can you please indicate how funding for NHS respite care is determined within your organisation, particularly if a patient s needs are determined to be mainly of a social care nature and where they have assets (savings and capital) above the 23,000 social care threshold? A. Every case is looked at individually. A Care Manager (Social Worker) is present at MDT and Panel. A patient s healthcare needs are looked at in totality and if the needs are identified as health care needs the NHS would pay for the respite costs. If a health need is identified then assets (savings and capital) are in no way taken into consideration. 16. The Royal College of Nurses (RCN) has recently published a definition of nursing which includes many aspects of care that PCTs have previously defined as social care and may not fund. Can you please comment on how the RCN definition of nursing is being interpreted by your organisation in relation to it undertaking Continuing Healthcare assessments, particularly for patients such as those suffering from dementia? A. This has not changed the way we look at assessments. Each case is looked at on an individual basis. 17. Can you please indicate whether your organisation has undertaken a risk assessment of possible legal class actions that may come from NHS Continuing Healthcare funding decisions based on the use of an inappropriate definition of nursing/healthcare care? A. No risk assessment has been undertaken.

18. In relation to the RCN definition of nursing versus your own organisations definition of social care needs and its funding, can you please indicate how your organisation addresses the potential discrimination that exists between the funding of the care needs of acute hospital patients versus those of patients who have healthcare needs within the community i.e. Patients resident in acute hospitals have their social care needs funded, yet under the NHS Continuing Healthcare policy there is discrimination in the funding of health and nursing care provided to some patients having health/nursing care needs (eg in the case of some dementia patients)? A. CHC eligibility is based on identified care needs irrespective of the care setting. All nurse assessors within the Milton Keynes & Northamptonshire CHC Service receive the same training and clinical supervision, regardless of where they undertake the CHC assessment. 19. Can you please indicate whether your organisation has undertaken a risk assessment of possible legal class actions that may come from discrimination/inequality resulting from decisions based on inappropriate use of definitions relating to health and social care needs? A. No risk assessment has been undertaken.