REPORT. by the PUBLIC SERVICES OMBUDSMAN FOR WALES. on an INVESTIGATION INTO A COMPLAINT. against

REPORT by the PUBLIC SERVICES OMBUDSMAN FOR WALES on an INVESTIGATION INTO A COMPLAINT against THE FORMER PEMBROKESHIRE & DERWEN NHS TRUST & PEMBROKESHIRE LOCAL HEALTH BOARD

CONTENTS Page No. 1. Summary 2. Foreword 3. The complaint 1 4. My investigation 1 5. The relevant law/guidance/policy/procedure 2 6. Events leading to the complaint 9 7. What the complainant had to say 26 8. What the Trust had to say 28 9. What the Local Health Board had to say 30 10. What my Professional Adviser had to say 34 11. Conclusions 35 12. Recommendations 41 13. Appendices 44

SUMMARY Mrs T, a lady who suffered from diabetes and an irregular heartbeat, had previously lived independently. She suffered a severe stroke in January 2006 as a result of which she was left with a number of problems and was totally dependent on others for her needs. Mrs T could not swallow or speak, and she was immobile and incontinent. She sadly passed away during the investigation (in March 2008). Mrs T was discharged from hospital to her daughter s home; Mrs G the complainant. Prior to discharge a specialist Nurse had submitted a limited application for Continuing Health Care Funding to the Local Health Board for equipment only; a special mattress, bed and hoist to assist in caring for Mrs T. Carers (provided through the Council s Social Services Department) attended daily to help Mrs G with her mother s needs, for which Mrs T was liable to pay. District Nurses otherwise attended to deal with the monitoring and treatment of her diabetes and heart condition. Further applications for full CHC Funding were made, at Mrs G s request, to meet her mother s considerable needs all of which were declined until the existing documentation was considered by a team from a neighbouring LHB in January 2008 who concluded that Mrs T satisfied the eligibility criteria for fully funded care, and had probably done so from the very outset. The Ombudsman s investigation reviewed all the documentation, which was also considered by one of his independent professional advisers. Numerous failings were discovered on the part of both the Trust and the LHB in dealing with Mrs T s case representing a series of errors, poor administrative practices and a breach of professional standards. These included: no proper assessment of Mrs T s needs against the CHC Funding criteria was undertaken at the outset before she was discharged from hospital- despite the combination of needs being sufficient to trigger such an assessment - resulting in a limited initial application for equipment; communication failings with Mrs G such that she was either asked for information already known or repeatedly asked for consent forms or power of attorney documents for her mother (who was in no position herself to now grant such) in order to later proceed with review requests for CHC Funding; the inevitable delays and frustration caused to Mrs G as a result of such requests and communication issues;

poor record keeping on the part of the LHB in that CHC Funding panels were not minuted and no clear record of the reasons for decisions kept a systemic failure at the relevant time; and a breach of the professional standards for nursing record keeping by the Trust s District Nursing Team such that year old documents (then undated) were re-used, whilst purporting to represent the current and up to date needs of Mrs T, upon which the funding decisions were based (the originals being subsequently re-dated, after the event, prior to their submission to the Ombudsman as part of his investigation). As a result of the catalogue of failings uncovered by the Ombudsman s investigation, both the Trust and the LHB put in place procedures to avoid a recurrence of some of the failures identified. The Ombudsman otherwise made a number of recommendations including that both the Trust and the LHB should offer a suitably worded written apology to Mrs G for the failures identified as well as financial redress of 1000 (to be apportioned equally between both bodies) in recognition of the injustice and distress she had suffered; the LHB should expeditiously complete the retrospective review of Mrs T s CHC Funding eligibility (back to the time of her discharge from hospital) and, if she was entitled, refund to her estate all monies already paid for the care provided to her by social services; and that the LHB should review its current arrangements for requiring consent or capacity forms. The Ombudsman further asked that Trust staff be reminded of the formality of his investigation and the evidence that is considered during it.

FOREWORD This report is issued under s 16 of the Public Services Ombudsman (Wales) Act 2005. In accordance with the requirements of that Act the report has been anonymised in so far as is possible without affecting its effectiveness. The report accordingly refers to the complainant as Mrs G and to her mother, whom the complaint relates to, as Mrs T. During the course of the investigation of this complaint unfortunately Mrs T passed away. The former Pembrokeshire & Derwen NHS Trust is referred to as the Trust and the Pembrokeshire Local Health Board is referred to as the LHB

Report under Section 16 of the Public Services Ombudsman (Wales) Act 2005, of an Investigation into a complaint made against the former Pembrokeshire & Derwen NHS Trust & Pembrokeshire Local Health Board THE COMPLAINT 1. Mrs G complained that: the Trust failed to carry out a comprehensive and / or proper assessment of Mrs T s Continuing NHS Health Care Funding eligibility prior to her discharge from one of the Trust s hospitals; the LHB failed to properly deal with the applications for Continuing NHS Health Care Funding made in respect of Mrs T; the LHB failed to properly deal with the appeals lodged against the decisions made on Mrs T s Continuing NHS Health Care Funding applications; the failures on the part of both the Trust and the LHB led to an unnecessary delay in the award of Continuing NHS Health Care Funding for Mrs T and caused Mrs G and her family undue stress. MY INVESTIGATION 2. One of my investigators obtained comments and copies of all the relevant documents from both the Trust and the LHB.I also took advice from one of my independent professional advisers: a former District Nurse who has extensive experience in the field of Continuing NHS Health Care Funding. I have also afforded Mrs G, the Trust and the LHB the opportunity of commenting on a draft of this report and I have taken account of their comments before finalising my conclusions. 1

3. I have also had regard to other public interest reports issued by me and by my predecessor dealing with complaints about funding decisions. It is also appropriate for me to take into account decisions made by other Ombudsmen on cases of a similar nature in reaching a view on a complaint made to me. At Appendix A, a summary of such a relevant case is set out. 1 4. On 1 April 2008, after the events leading to this complaint took place, all functions, rights and liabilities of the Pembrokeshire & Derwen NHS Trust were transferred to the Hywel Dda NHS Trust 2 to whom this report is now addressed. THE RELEVANT LAW / GUIDANCE / POLICY / PROCEDURE My jurisdiction 5. The PSOW Act empowers me, as Ombudsman, to investigate alleged maladministration which term, though not defined, is traditionally accepted to mean the manner in which decisions are reached or the manner in which they are, or are not, implemented. I cannot question the merits of a decision made by a body if that decision has been properly made, without maladministration 3. In addition, I can consider whether the decision reached is one a reasonable body would have taken, or is so unreasonable as to be perverse. 6. I am further empowered by the PSOW Act to adopt whatever procedure for conducting an investigation as I think appropriate 4 and, to this end, I routinely call for sight of original documents for examination. I may in certain circumstances find that an individual s action, without lawful excuse, is an obstruction to the investigation or, if the proceedings were a court, could be classed as contempt of court for which, if I feel it necessary, I am enabled to issue a certificate to ask that the High Court inquire into that matter. 5 1 Ibid Case no E.2119-01 2 The Pembrokeshire and Derwen NHS Trust (Transfer of Staff, Property, Rights, and Liabilities) Order 2008 No 936 (W96) 3 Public Services Ombudsman (Wales) Act 2005 s11 4 Ibid ss13 &14 5 Public Services Ombudsman (Wales) Act 2005 s15 2

The law 7. The law 6 has enabled individuals to make advance provision for certain decisions to be made on their behalf if they were to suffer from a fluctuating, or loss of, mental capacity by the appointment of an Attorney with an Enduring Power ( EPA ). Attorneys appointed under an EPA are only authorised to make decisions concerning property and affairs and are required to register their powers with the Court of Protection. More recently 7 the legal provisions changed, although EPAs already created continue to have effect. Since the change in the law a Lasting Power of Attorney ( LPA ) can be created which, unlike an EPA, will have the potential to make decisions concerning personal welfare matters (including health care and medical treatment). In either case, however, the donor of the EPA or LPA must at the time of creating it, possess mental capacity for making the decision and granting the power to their nominated Attorney. Otherwise where a decision needs to be made in respect of a person who has developed a lack of capacity (it having been impaired by some acquired brain injury or stroke) the law requires decisions to be based upon the concept of best interests and to, in effect, do what the individual would themselves have done were it not for the event resulting in their incapacity. This can be ascertained from relevant third parties, including relatives. 8. The law imposes a number of duties upon Local Authority Social Services Departments ( social services ) to provide services to disabled and vulnerable people. Where a person is aged over 18 and, is by reason of age illness or disability in need of care and attention not otherwise available, social services are under a duty to provide accommodation for such an individual 8 for which they may charge fees. The NHS also has obligations to care for such individuals who often require nursing and health services, so creating an overlap. 6 Enduring Powers of Attorney Act 1985 7 As from October 2007 by the implantation of the Mental Capacity Act 2005 which also made changes to the operation of the Court of Protection 8 National Assistance Act 1948 s21 3

9. In July 1999 the Court of Appeal gave a crucial judgment 9 relating to funding for long term care (which I shall refer to as the Coughlan judgment ). The court considered the question of whether nursing care for a chronically ill patient might lawfully be provided by a local authority as a social service 10 (in which case the patient paid according to their means) or, whether such care should legally be provided free of charge as part of the NHS. 11 10. The Coughlan judgment said that, as a general rule, if the nursing services were: i) Merely incidental or ancillary to the provision of the accommodation which the local authority is under a duty to provide; and ii) Of a nature which it could be expected that an authority whose primary responsibility is to provide social services could be expected to provide, then they could be provided by social services. In other words the level of nursing service which can lawfully be funded by a local authority social services department is of a low level both in terms of its quality and quantity. In addition where the care takes place does not determine eligibility for continuing health care funding. The Coughlan judgment stated: where the primary need is a health need, then the responsibility is that of the NHS, even when the individual has been placed in a home by a local authority the fact that a case does not qualify for inpatient treatment in a hospital does not mean that the person concerned should not be a NHS responsibility 9 R v North East Devon Health Authority ex p Coughlan (2000) 2 WLR 622 10 National Assistance Act 1948 s21(8) 11 National Health Service Act 1977 ss 1 & 3 4

11. In January 2006 the High Court gave judgment in another case dealing with continuing health care (which I shall call the Grogan judgment ) 12. The Court reinforced the primary health need approach of the Coughlan judgment and also addressed the issue of where gaps in entitlement occurred. The Grogan judgment stated that the ability of social services authorities to provide care was set out in statute and explained in the Coughlan judgment whereas the primary health need approach was developed in government policy documents. Any such policy could not undermine the law. Further, government guidance had already stipulated that there must be no gap in funding entitlements. 12. People will therefore qualify for Continuing NHS Health Care Funding if the complexity, intensity or unpredictability of their health care needs means that the care required is neither incidental to, or ancillary to, what social services can be expected to provide (in line with the Coughlan judgment). Care can be provided in the family home setting and the individual need not be in a residential care home placement. Equally, some health care can be provided by family and untrained health professionals as the critical issue is what the individual s total health care needs are, as opposed to who might deliver all the care required. 13 13. A statutory authority must not reach a decision to which no reasonable authority could have come to (commonly known as a perverse decision). 14 It must also act fairly and in accordance with natural justice 15 : fairness commonly requires that a person who may be adversely affected by a decision should have an opportunity of making representations before it is made and that reasons should be given for the decision once made. 12 R v Bexley NHS Care Trust & others ex p Grogan [2006] EWHC 44 (Admin) 13 A report by the Health Service Ombudsman for England -Case no E.22/ 02/ 02-03 (known as the Pointon Case ) 14 Associated Provincial Picture Houses Ltd v Wednesbury Corporation [1948] 1KB 223 CA 15 Ridge v Baldwin [1964] AC40 HL & R v Home Secretary exp Doody [1994] 1AC 531 HL 5

Government Guidance 14. In August 2004 the Welsh Assembly Government issued guidance to Local Health Boards 16 ( the 2004 guidance). It contained paragraphs dealing with the criteria for Continuing NHS Health Care Funding ( CHC Funding ) including that set out in the Coughlan judgment. It also gave guidance on how the criteria should be applied by the LHB in its decision making process. Relevant paragraphs extracted from the 2004 guidance are reproduced in Appendix A to this report. In addition the 2004 guidance provided an Annexe of definitions of the terms used within it including for both CHC Funding and for Long Term Care. 15. In October 2006 the National Assembly for Wales issued further guidance (the 2006 guidance) 17 to the NHS and Local Authorities in Wales on CHC Funding to take account of the implications of another High Court judgment 1 ( the Grogan case ). The 2006 guidance provided advice and recommendations in light of the Grogan case. The section on Action that Local Health Boards should take specified a number of matters including the need to consider reassessing service users in light of the guidance. Relevant extracts are also more fully set out in Appendix A to this report. Pembrokeshire Local Health Board s Policies and Procedures 16. During the time covered by events the LHB reviewed its CHC Funding Policy and procedure. The first period was covered by the LHB s document Regional Implementation Plan for Continuing NHS Health Care and Continuing Health Care Policy in place from June 2005 - December 2006 (and so issued after the Coughlan judgment and 2004 guidance) and The Local Operational Plan for Continuing NHS Health Care effective from 1 June 2005 ( the CHC Policy ).The CHC Policy explicitly stated at its introduction that the 2004 guidance and the Coughlan Judgment (together with recommendations from a 16 NHS responsibilities for meeting continuing NHS health case needs WHC (2004) 54 NAFW 41/2004 17 Further advice to the NHS and Local Authorities on Continuing NHS Health Care WHC (2006)046 NAFW 32/2006 6

report by the Health Service Ombudsman in England) had been taken into account in drafting it. 17. The CHC Policy stated that a wide variety of circumstances would trigger the decision to carry out a comprehensive assessment of an individual and the need to consider their eligibility for CHC Funding based on four criteria: whether an individual had health care needs which were complex, intensive, unstable, unpredictable or considerable (Criterion 1) or, regular NHS supervision or the routine use of specialist equipment was required (Criterion 2) or, whether the individual required significant health care input because of a rapidly deteriorating condition (Criterion 3), or if the individual was in the final stages of a terminal illness (Criterion 4). It stated that the needs (triggering such an assessment for CHC Funding eligibility) would be identified at certain instances / events, including when planning an individual s discharge from hospital or following a major health episode for a person living in the community which involved referral to NHS services and / or a significant change in their care needs. The CHC Policy was drawn up (as was the Regional Implementation Plan) and shared in common with six other Local Health Boards covering neighbouring areas. A fuller extract of it is appended to this report at Appendix B. 18. An additional policy document 18 was issued by the LHB for implementation in December 2006 (to be reviewed March 2008), following a review of CHC Funding procedure, in particular with regard to the process for reviewing funding decisions ( the CHC Review Policy ). Amongst other matters the CHC Review Policy confirmed that a patient or their representative had the right to request a review of a CHC Funding decision before the discharge of the patient from hospital and that whilst the review was conducted the patient was entitled to remain in NHS funded accommodation if already there. In addition they were entitled to continue to receive any hospital care or such other care package in 18 A Process for Managing Requests for the Review of Decisions made in respect of Continuing NHS Health Care and NHS Funded Nursing Care 7

place until the outcome of the review was known. The CHC Review Policy was also drawn up and shared in common with the same six bodies as the CHC Policy above, and relevant extracts from it are set out in full at Appendix C. The Nursing & Midwifery Council Codes of professional conduct and practice 19. The core function of the Nursing & Midwifery Council ( the NMC ) is to establish standards of education, training, conduct and performance for nursing and midwifery and to ensure those standards are maintained, thereby safeguarding the health and wellbeing of the public. Consequently the NMC issues guidance to its nursing membership, from time to time, to ensure its standards are maintained. 20. Extracts from relevant guidance documents in place covering the time over which events relating to this complaint took place are more fully set out at Appendix D. They are summarised in the following paragraphs. The NMC code of professional conduct: standards for conduct, performance and ethics (November 2004) 19 21. This document (which I shall call the 2004 NMC code ) sets out the standard of conduct a member of the public can expect to see exercised in practice by a registered nurse covered by the 2004 NMC code. Any such nurse is personally accountable for their actions and must act in such a way as to justify the trust and confidence placed in them by the public. NMC Guidelines for records and record keeping (April 2002) 22. This guidance ( the NMC records guidance ) was reviewed in July 2007 and an updated advice sheet specifically dealing with record keeping was issued as from that date ( the NMC records advice ). The period to which the complaint relates is covered by both documents. They can be summarised as follows: 19 This version has since been reviewed and reissued for implementation from 1 May 2008 8

The NMC records guidance 23. This states that accurate record keeping is an essential and integral requirement for nursing professional practice as it helps protect the welfare of patients. Accurate records aid the necessary communication required between a number of professionals who might be involved in a patient s care. They will also rely on the record. Good record keeping also mirrors safe practice. Records should be written up as soon as the event has occurred and be factually accurate in providing a current record of the patient s care and condition. Entries in records should be dated, timed and signed in such a way that if alterations are needed, the original should still be readable. Nurses have a professional and legal duty of care and a record should reflect the assessment made, and care provided to a patient, containing such information as is relevant to the patient s condition at any given time. The NMC records advice 24. This document in effect reaffirms, and largely reiterates, the position set out in the NMC guidance above in that records should be accurate, denoting the time at which they were written and the condition of the patient at that time. EVENTS LEADING TO THE COMPLAINT 25. In summary, Mrs T, who at the time was 87 years old and had lived independently, suffered a severe stroke and was admitted to one of the Trust s hospitals ( the hospital ) in January 2006. She was an insulin dependent diabetic with a history of arthritis and she also suffered from atrial fibrillation (an irregular heart beat) which was controlled by warfarin (a blood thinning agent). Following her stroke, Mrs T was left unable to swallow, was immobile, incontinent and unable to speak. Mrs T remained at the hospital until her discharge to Mrs G s home on 3 May 2006 (where Mrs T remained until she, sadly, passed away on 27 March 2008.) 9

26. Mrs G applied to the Trust for CHC Funding for Mrs T s care in June 2006 (a previous application for equipment only had been submitted before Mrs T was discharged from hospital -see below). Both applications were submitted to the LHB s Panel, which considered applications, by the Clinical Nurse Specialist Continuing Health Care ( the CHC Nurse ) who was charged with assessing and presenting such applications (see chronology below) and was based at the Trust s hospital. The LHB concluded that Mrs T was not eligible. Mrs G spoke to the Trust s officer and the application was re-considered by the LHB Panel but, again, refused on the 25 July 2006 on the grounds that there was no evidence to support the requirement for complex, specialist or intensive nursing or medical support [for Mrs T]. In November 2006 Mrs G wrote to the LHB to ask that the application be considered again by a Review Panel. It was to be considered at the Panel in January 2007 but Mrs G was advised that it was deferred for an up to date assessment of Mrs T. In June 2007, being unhappy with progress, Mrs G wrote to the LHB s Chief Executive asking that the application for CHC Funding be reviewed. 27. On 19 September 2007, the LHB informed Mrs G that it could not proceed with the review request as it appeared she had not been appointed with power of attorney to act for Mrs T. In November 2007, a further application for CHC Funding for Mrs T was made. Mrs G complained to my office on 19 December 2007. The CHC Funding application was considered by the LHB s Panel on 22 January 2008. It concluded that Mrs T did meet the CHC Funding criteria through intensity of need and her care package would be fully funded as from that date. The LHB indicated that it would review Mrs T s case as from June 2006 (her original application) but, in order to do so, it required a consent form to be completed as well as a copy of an Enduring Power of Attorney document for Mrs T. 28. A more detailed chronology of events is contained below together with extracts from relevant documents from both the Trust and LHB s files as set out. 10

Chronology and relevant documents 17 January 2006 Mrs T suffered a stroke and was admitted to hospital. 28 February 2008 Mrs T was fitted with a PEG-tube feed 20 given she could not swallow and therefore eat / drink normally. 20 March 2006 An assessment of Mrs T was carried out [by an officer L ].The assessment document was headed Pembrokeshire County Council/ Pembrokeshire & Derwen Trust / Local Health Board each page being a relevant assessment domain culminating in a two page proposed care plan for Mrs T. The following were described as the domains under consideration: Domain No 1 - Users perspective; Domain No 2 - Carers perspective and need for carers assessment; Domain No 3 - Clinical background; Domain No 5 Personal Care and physical wellbeing; Domain No 6 Activities of daily living. Although each page included the ability to denote the level of assessment carried out (overview, specialist/in depth or comprehensive), no box is ticked. Each assessment page also included the ability to score the assessed need in terms of a risk to safety as follows: C- High risk to safety and well being; S- Medium risk to safety and well being; M Potential risks to safety and well being; L Low /controlled risk to safety and well being. The score attributed (by asterix) on each domain sheet was as follows: 20 Percutaneous Endoscopic Gastrostomy tube is commonly called a PEG tube and is fitted where patients cannot swallow to aid adequate nutrition and hydration 11

Domain 1 S Domain 2 - S Domain 3 C Domain 5 S Domain 6 un-scored (but see below) The care plan included details of the areas of identified need (including domain numbers and level of assessment completed), a description of ways in which the individual would like the needs to be met, how those needs would be met and by whom, the desired outcome and when a review would take place. The care plan identified that a home care agency would provide support with the tasks identified on the task sheet four times daily. The domains noted within this care plan were Domains 1, 2, 5, and 6 all with an S score. There was no reference to Domain 3. The Domain No 3 sheet included information concerning Mrs T s current medication, health needs and her medical history as follows: Current medication: [Mrs T s] prescribed medication is to be dispensed as appropriate prior to discharge from [hospital]. [Mrs T] currently has a peg tube feed in situ (inserted 28.02.06) which current medication is being administered through. Recent Hospital Admissions: 17 January 2006 [Trust hospital]- collapse/diag. CVA. Health Needs: As highlighted above [Mrs T] currently has a peg tube feed in situ which was initially inserted on the 28 th February. [Mrs T] is unable to take any nutrition or medication orally and will be discharged to the community with the peg feed. [Mrs T] is also doubly incontinent and is currently wearing an all in one incontinence pad. [Mrs T] is currently being hoisted with 2 carers from bed to chair and back. [Mrs T] is presently being nursed upon a profiling bed/ nimbus mattress. Occupational Therapist to ensure all necessary equipment is in place prior to discharge. 12

Medical History: Hypertension; Insulin dependent diabetic; long-standing arthritis and some recent back ache. 21 March 2006 A care plan was completed at the hospital treating Mrs T (and subsequently sent to the LHB see below). It detailed 6 identified problems (including dysphasia, 21 diabetes, and that she was on warfarin therapy) with related actions required for each problem. Mrs T s Barthel score 22 since admission was 0, as compared to 19 before her stroke, thus she was totally dependent on others. A nursing assessment /personal care form was also completed on 22 March which detailed 10 key individual needs with a score rating of 1-5 for each (with examples given as guidance for the assessor): 1 being the lowest score indicating the greatest level of independence and least care need input required, and 5 being the highest representing dependency on others. Of a possible total score of 50, Mrs T s score was 47 and included, for example, a score of 5 for the following: Activity Example/ guidance note Eating and Drinking Totally dependent for food and drink and / or at risk of choking. Sensory Awareness Sight/hearing Communication Behavioural Night Time Support Requires skilled nursing assistance. e.g. heightened sensory stimulation. Disruptive / agitated aggressive or disorientated. Requires constant supervision or management. Requires skilled attention throughout the 24 hours period. 21 Dysphasia is the result of damage caused to the brain; often as a result of a stroke (CVA). 22 The Barthel score is commonly used in hospitals to assess an individual s ability to perform daily essential living tasks independently 13

22 March 2006 A sheet headed Record of Decision to Proceed / Not to Proceed to a Formal Assessment for Health Funding [identified as a Form DPFA] was completed by the CHC Nurse (and submitted to the LHB who stamped it as having been received there on 24 March 2006, as was the care plan and scores referred to above). The reasons for considering section of the form contained a list of five options with a tick box (completed) as follows: The Individual has complex, intensive, unstable, unpredictable or considerable health care needs Yes ( )No ( ) The Individual has a rapidly deteriorating or unstable medical, physical or mental health condition Yes ( )No ( ) The Individual s needs require the routine use of specialist health care equipment Yes ( ) No ( ) The Individual is in the final stages of a terminal illness (given in weeks) Yes ( ) No ( ) Or The Individual has a combination of complex health and social needs which require assessment for consideration of joint funding arrangements Yes ( ) No ( ) Decision Reached: proceed Rationale: Equipment required for long term use prior to discharge. 24 March 2006 A letter was written by the Trust s Consultant Physician, who was treating Mrs T, to the CHC Nurse. It detailed Mrs T s medical issues stating that she was dysphasic suffering from expressive and receptive dysphasia (expressive in this case meant that she was unable to speak and receptive that she had difficulty in making sense of what was heard / understanding). The letter 14

stated that the stroke had left Mrs T with a right hemiplegia 23 and she required feeding via a PEG tube. It also stated that on discharge into the community Mrs T would require follow up attendance by a physiotherapist, speech therapist (if the PEG tube might be removed in the future) and by the gastroenterology nurse specialist. In addition to Mrs T s medical problems (listed as insulin dependent diabetes and controlled atrial fibrillation for which she took warfarin), the letter stated that she would on her discharge from hospital require a special mattress, a bed with cot sides, a hoist and a special chair. This letter was stamped as having been received by the LHB on 27 March 2006. 28 March 2006 - The Continuing Care Management Panel ( CCMP ) met to consider funding applications including the application submitted by the CHC Nurse on behalf of Mrs T (for the specialist bed, chair and associated equipment).the equipment funding was approved. [There were no recorded minutes of the CCMP and its decision.] April 2006 The equipment was delivered to Mrs G s home. 3 May 2006 Mrs T was discharged from hospital to Mrs G s home. The cost of assistance from carers (employed through the Council s Social Services Department) for 14 hours per week was payable by Mrs T. [Invoices were subsequently issued periodically for the charges concerned.] 16 June 2006 Mrs G wrote a letter to the CHC Nurse (enclosing details of what daily care she provided to Mrs T). The letter ended by stating I trust that this will support her application together with all the relevant information you will have obtained. 22 June 2006 A Form DPFA (in the format set out above) was completed by a District Nurse Team Leader with the Reasons for Considering the Individual 23 Right hemiplegia is a paralysis of the right side of the body 15

option ticked as The Individual has complex, intensive, unstable, unpredictable or considerable health care needs. It was sent to the CHC Nurse for submission to the LHB, together with supplemental documents that included a nursing care plan for Mrs T (who was noted to be 88 years old), an assessment score, and a consent form signed by Mrs G. The nursing care plan (which itself was not dated with a date of its completion but was signed by the District Nurse Team Leader) identified 7 problems. In essence, the same problems (presented differently) as recorded in the nursing assessment submitted with the first application to the LHB in March 2006 (see above) were noted. However, there was no mention of the warfarin therapy for Mrs T s heart problem albeit the drug was listed in the accompanying medical history sheet as part of the core information about Mrs T. Copies of the original documents submitted with the March 2006 application were resubmitted with this application. A letter (undated but stamped as received at the Trust s office on 27 June 2006) was written by the District Nurse Team Leader to the CHC Nurse to accompany the documentation and stated: Enclosed is [an] application for [Mrs T] of [address] for care at home under Criteria 1 due to her complex on-going problems. 28 June 2006 The CHC Nurse wrote a letter to the LHB to accompany the CHC Funding application and documents listed above. The letter is stamped as received by the LHB on 30 June 2006, as are all the documents submitted by the District Nurse Team Leader in support of the application. The letter written by the CHC Nurse included the following information: Enclosed is an application for Continuing NHS Health Care which I submit to you under criteria 1 to fund some respite and her personal care visits 4 times each day. The family of [Mrs T] have requested that this application be submitted as they feel that [Mrs T] has complex and intense health care needs. The 16

family believe that her care should be fully funded by health. I have enclosed with this application an hourly notebook from [Mrs T] s daughter at her request. I have spoken to the District Nurse who has compiled the application and her GP has agreed to provide a letter...... [Mrs T] has a medical history of AF, hypertension, insulin controlled diabetes, osteoporosis, rheumatoid arthritis, vascular dementia, CVA with dysphagia and dysphasia. She has a PEG feeding tube in situ 4 July 2006 The CCMP met to consider CHC Funding applications including that submitted on behalf of Mrs T. There are no minutes recording the discussion or reasons for the CCMP s decisions that day. A table dated 4 July lists the funding applications considered and outcomes. Opposite the name of Mrs T was recorded: Outcome Not Approved; Comments /reason for decision [a blank space] Following the CCMP a letter was written that same day by the LHB s Integrated Care Manager to the CHC Nurse stating: I write with regards to your application for Continuing NHS Healthcare funding for the above named lady under Criteria 1. I can confirm that this request was fully considered by the Continuing Care Management Panel on the 04.07.06. As a result, I write to advise you that from the information provided, the Continuing Care Management Panel did not consider that the eligibility criteria for funding were fulfilled and therefore funding was not approved. The decision was reached because there was no evidence to support the requirement for complex, specialist or intensive nursing or medical support 17

13 July 2006 The CHC Nurse wrote a letter addressed to Mrs T and her family relaying the CCMP s decision (repeating the second paragraph of the CCMP s letter as above). The letter went on to say: [Mrs G], as we discussed today you will put in writing the questions you have to the Local Health Board with regard to their decision. I have informed my colleagues at the LHB about our conversation and on receipt of your letter they will discuss your concerns further when the Panel meet on Tuesday 18 th July 2006. I have enclosed some pages of Pembrokeshire Local Health Board s Continuing NHS Health Care Policy that I hope will be helpful to you. Again I kindly request that if there are any health professionals involved with [Mrs T] s care, who feel that they have additional information to submit that they forward it to me at their earliest convenience 19 July 2006 - Mrs G wrote a letter to the CHC Nurse outlining the problems faced by her mother and the extent to which she had to be cared for by Mrs G and other medical staff. The full text of the letter is reproduced at Appendix E. It is stamped as received by the LHB on 20 July 2006. 25 July 2006 The CCMP met to consider funding applications and considered Mrs T s application again. There are no minutes recording the discussion or reasons for the CCMP s decisions that day. A table dated 4 July lists the funding applications considered and outcomes. Opposite the name of Mrs T was recorded: Outcome Not Approved; Comments /reason for decision Prev[iously] not approved. Letter of appeal rec d from family. No complexities. 28 July 2006 The CHC Nurse wrote a letter to Mrs G confirming that Mrs T s funding application had been unsuccessful and also stated: 18

The Panel acknowledged that in your letter you state that [Mrs T] would be unable to cope without extensive help in personal care. The Panel noted this, however, personal care needs can be provided by Social Services with the District Nurses providing the required health support 20 August 2006 Mrs G wrote to the Welsh Assembly Government about Mrs T s refused funding applications and questioned why Mrs T s needs were not considered to be complex, severe, or unpredictable. 12 August 2006 The Welsh Assembly Government replied to Mrs G and stated it could not comment on individual cases and decisions which matters should be discussed with the relevant LHB. 8 November 2006 Mrs G wrote a letter to the LHB s Integrated Care Manager which stated that she wanted a review of the refusal of Mrs T s applications for CHC Funding. [This was acknowledged by the LHB on 22 November 2006.] 6 December 2006 The LHB Integrated Care Manager wrote to Mrs G stating that it required Mrs T s name, address, and date of birth before it could progress the issue further. 21 December 2006 The LHB s Integrated Care Manager wrote a letter to Mrs G following telephone discussions with her. The letter stated: I am writing to let you know that I am currently reviewing [Mrs T] s application for funding. It is my intention to represent her case to our Continuing Care Management Panel on 2 nd January 2007. I will advise you of the outcome of this as soon as possible. Should you remain unhappy with the decision reached on 2/1/2007, I will initiate the independent review process 19

23 January 2007 The LHB s Integrated Care Manager wrote to Mrs G and stated that as Mrs T s assessment was undertaken in June 2006, the CCMP had requested that an updated assessment of needs be conducted before a review could be undertaken. 31 January 2007 Mrs G wrote a letter in response to the LHB which stated: The length of time this is taking is unacceptable, especially as this funding should have been in place prior to my mother s discharge from hospital on 3 rd May 2006. [name] District Nurse and other professionals made the initial assessment in June 2006. Nothing has changed since then as [they] can confirm. My mother s care and our routine is exactly the same Would you please send by return the correct form required so that I may request an Independent Review, as I want to start this immediately 28 February 2007 The LHB Integrated Care Manager wrote a letter to Mrs G which stated: Please accept my apologies for not responding sooner. One of the reasons for this is because the Local Health Board was awaiting the issue of the updated review process. This was received by the Local Health Board last week and it outlines the new arrangements for current and retrospective reviews. I apologise for not having kept you fully informed and accept that this should not have happened. I note from your letter that you want an Independent Review of [Mrs T s] case to be initiated 20

I am therefore enclosing a copy of the review process and a consent form that needs to be completed and returned to me. The consent form is to allow the Local Health Board to access all relevant health and social care records. On the information currently available the [CCMP] has not been able to reach a conclusion on [Mrs T s] case and an Independent Review would be beneficial. This will have to include a new assessment and I would be grateful if you could contact me to discuss this. I will forward a copy of your letter and my response to the Local Health Board s Business Manager (name) who deals with complaints for her records 12 May 2007 Mrs G wrote a letter to her Assembly Member which stated: I am enclosing some additional information regarding my mother s application for fully funded NHS Healthcare. Received letter dated 28 th Feb 07 with enclosure of new guidelines (enclosed). As a lay person reading these it would seem they nullify my mother s application as I do not have Enduring Power of Attorney or am a receiver appointed by the Court of Protection. Prior to her stroke she was very independent and these things were not necessary. It would seem that whatever point you raise, the Welsh Assembly Government will bring out legislation which moves the goalposts totally. I now realise why it took [the LHB s Integrated Care Manager] eight weeks to inform me of the outcome of the 2:1:07 meeting. 21

I have not responded to [the LHB s Integrated Care Manager s] letter of 28 th Feb 07 as after twelve months of dealing with these people, words fail me 19 July 2007 Mrs G wrote an undated letter to the LHB giving permission for access to Mrs T s medical records and also completed a form headed Request for an investigation of possible eligibility for Continuing NHS Health Care for cases dating from 1 st April 2003 onwards. Both were stamped as received by the LHB on 19 July 2007. [An identical copy of the same form was also date stamped as received on 25 July 2007.] 19 September 2007 The LHB Business Manager [see above] wrote a letter to Mrs G which stated: I am writing with reference to your correspondence relating to your request for funding under the NHS Continuing Health Care Programme for your mother. We have received legal advice which prevents us taking the request further due to there being no appointed power of attorney. I appreciate that this is a frustrating position and apologise for the delay in processing the decision. I would suggest holding a meeting with yourself, your mother s social worker, [the] Clinical Services Development Manager from the Local Health Board and a mental health advocate. You are of course welcome to bring someone with you to the meeting. I feel that this is the best way forward so that we can discuss the complexities of the consent issues and agree a suitable way to progress the issues 22

29 November 2007 A consent form and DPFA Form (see above) to proceed with an application for CHC Funding was completed by the District Nurse Team Leader. The tick box option (again see above) selected was the individual had complex, intensive, unstable, unpredictable or considerable health care needs. In addition a nursing care plan (undated) was included with the documents passed to the CHC Nurse for submission to the LHB. It is entirely identical in its form and content to the one submitted in June 2006 (including Mrs T denoted as being 88 years old - see above) save in one respect. The plan has an additional sheet to the June 2006 document (again undated but with Mrs T said to be 88 years old) relaying information relating to Mrs T s warfarin monitoring, her dysphasia and family respite. The accompanying letter from the District Nurse Team Leader to the CHC Nurse (dated 28 November 2007) read: Please find enclosed continuing care application for provision of respite care at home under criteria one. Enclosed is [a] GP letter of support speech and language will provide a letter of support to you directly. An application for continuing care under criteria 1 for provision of care was submitted on 22.6.06, however refused. The patient s needs have not changed since then. 17 December 2007 A letter was written by the CHC Nurse to the LHB to accompany the above application documents. It stated: As you may recall this is an application that has been submitted previously in June 2006. I understand that this lady s daughter [Mrs G] has spoken many times to various members of staff at the LHB I have asked the District Nurses to complete a whole new application so that we may be able to have up to date information about this lady. [Mrs T] is an 88 year old lady who lives at home with her daughter and son-in-law and their family. She has a history of rheumatoid arthritis, vascular dementia, osteoporosis, hypertension, atrial fibrillation, diabetes 23

and suffered a CVA in 2006. She was dysphagic following her CVA and so had a PEG feeding tube inserted [Mrs T] has a dense right sided hemiplegia following the CVA. She is hoisted for all transfers in and out of bed. Her PSPS [Pressure Sore Prediction Score] is 12 and she is nursed on a profiling bed with cot sides and a nimbus mattress She is dependent upon her carers for all of her personal care requirements She has both expressive and receptive dysphasia as a result of her CVA I have asked that the District Nurses ask the SALT [Speech and Language Therapist] to review [Mrs T] so that we are aware of her current swallowing ability and to ascertain how much of a risk of aspiration there is. She requires regular oral care to remove any excess saliva. [Mrs G] is insistent that I submit this application to the Panel without the SALT report. I have agreed to do so but I have expressed the need for the SALT report in view of [Mrs T s] ongoing swallowing problems and her ongoing recurrent chest infections [Note At this time Mrs T was in fact 89 years old - 4 months short of her 90 th birthday.] 17 December / 22January 2008 In an undated e-mail, sometime between these two dates, an officer from Ceredigion LHB wrote to an officer at Pembrokeshire LHB and stated: [X] and myself have looked through the folder you gave me yesterday [Mrs T]. We completed a WAG matrix based on the evidence provided and have concluded that if you consider intensity and quantity of care needed to meet her needs then she does meet the criteria of having a primary 24

health care need. I ve included in the file a copy of the definition of the primary health care need in the draft national framework for NHS continuing health care [The Draft National Framework is a document published by the Department of Health for England] Whilst we are not currently working to this legally it could be considered best practice to adopt the principles identified within it. It does not identify what care package is being requested for funding by health but it does seem reasonable that the existing care package should be funded by health as it appears to be meeting her needs adequately at this time. You may have a problem in that as her needs have not changed substantially since the original submission the Local Authority / family may pursue for funding from that time, however the LHB could argue that the evidence provided does not fully clarify the intensity / quantity of care being provided. If she were in a care home then it could be argued that she would meet the criteria for NHS funding but this cannot be accessed for care in the community as you know. Hope this has been of some help. I will make sure the file gets back to you before Tuesday. 22 January 2008 [a Tuesday] The CCMP met to consider funding applications including the above application submitted by the CHC Nurse on behalf of Mrs T. There are no minutes recording the discussion or reasons for the CCMP s decisions that day. The table for 22 January 2008 lists the funding applications considered and outcomes. Opposite the name of Mrs T was recorded: Approved Case looked at by Ceredigion [named officers]. Matrix completed. They feel that her primary need is health. Approved from 15.01.08. Taking over personal care plus 24hr care when family need to go away. 25

23 January 2008 The LHB wrote to the CHC Nurse to confirm the outcome of the CCMP and that Mrs T s application had been approved. The letter also stated that the LHB would: instigate a full review of Mrs T s case from June 2006. In order for this to commence, a Consent Form must be completed and returned along with a copy of Enduring Power of Attorney. I will forward a Consent Form to [Mrs G] for completion 1 February 2008 The CHC Nurse wrote to Mrs G to inform her of the outcome of the CCMP and to say that the application for CHC Funding for Mrs T had been approved. A consent form was enclosed for Mrs G to sign with a request that it was returned with an Enduring Power of Attorney document in order for the LHB to instigate a full review of Mrs T s case (and earlier applications). 27 March 2008 Mrs T passed away. WHAT THE COMPLAINANT HAD TO SAY 29. Mrs G submitted her complaint to me in January 2008 and stated that she felt both the Trust and the LHB had failed to consider her mother, Mrs T s, needs fully and had not addressed her need for respite care. She said that she had provided dates for respite provisions to the CHC Nurse (of 6/7 December 2007 and 24/27 January 2008) but nothing came of her request. Mrs G said that Mrs T s needs were considerable and she had provided details as to what her daily care involved when the application for CHC Funding was submitted (see Appendix E). Mrs T s needs had not changed throughout, Mrs G said, and so when the LHB informed her in January 2008 (shortly after she had submitted her complaint to me) that it would now fund her care from 22 January 2008, she felt that the situation has now reached complete and absolute farce. Mrs G said: 26