Service Review of Current Health and Social Care Provision for People with Pancreatitis
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Service review of current health and social care provision for people with pancreatitis July 2018 Contents Executive summary Section 1: Introduction 1 Abridged Terms of Reference 6 Acknowledgements 9 Methodology 9 Legal standard of medical treatment 10 Pancreas 11 Pancreatitis 13 Acute pancreatitis 15 Chronic pancreatitis 17 Hereditary pancreatitis 18 Pain 20 Observations 25 Section 2: management of pancreatitis 28 Diagnosis 28 Treatment of acute pancreatitis 29 Treatment of recurrent acute pancreatitis 30 Treatment of chronic pancreatitis 31 Mental health 41 Observations 42 Section 3: housing and social care issues 48 Application for priority sheltered housing - medically vulnerable 48 Application for priority sheltered housing – declined 49 Taunton and Deane Borough Council Housing Options 2018 51 Taunton and Deane Borough Council Housing: managing complaints 53 Adult social care 54 Mr Andrew Prentice’s adult social care 56 Deane helpline service 56 Deane helpline service 2018 58 Provision of information: adult social care services in Somerset 58 Help with taking medicines 59 Assessment of adult social care needs 62 Obtaining a second opinion 64 Monitoring of social needs assessments and care plans 66 Pancreatic diabetes mellitus 66 Short breaks for carers 68 Monitoring of service users health 69 Multi-agency working 70 Advocacy services 70 Hospital discharge care packages liaison 72 Safeguarding 72 SCC Adults Social Care Services: managing complaints 74 Multidisciplinary and multiagency working 78 Funding of social care 79 Listening to service users, families and carers 79 National Health Service Continuing Healthcare 80 Transportation 80 Help for Service Users involuntarily dependent upon prescribed opiates 81 External monitoring of the quality of care provision in Somerset 82 Observations 82 Section 4: healthcare issues 86 Managing diabetes service 86 Help for the homeless 87 Obtaining a second opinion 88 Managing complaints 88 Safeguarding 89 District nursing service 89 Hospital adult social care discharge package 90 In-hospital adult social care services 90 Education 90 Listening to parents and/or carers 90 Incorrect information in medical notes 91 Knowledge of NHS continuing healthcare 92 Upper gastrointestinal surgery 92 Smoking 92 Obtaining a second opinion 93 Managing complaints 94 Analgesia 94 Listening to parents and/or carers 94 Involuntary dependency on prescribed drugs 94 Incorrect information in medical notes 95 NHS Pain management service 95 Pancreatitis 95 Smoking 96 Obtaining a second opinion 96 Multidisciplinary meetings 97 Managing complaints 97 Analgesia 97 Involuntary dependency on prescribed drugs 99 Safeguarding 100 Adult social care services for chronic pain sufferers 100 Incorrect information in medical notes 101 Epilepsy service 101 Adult social care discharge packages from Musgrove Park Hospital 102 Assessment for an adult social care discharge package 102 Multidisciplinary meetings 104 Safeguarding 105 Help with taking medicines 105 District nursing service 105 Housing 106 Listening to families and/or carers 106 NHS Continuing healthcare 106 Training of adult social care discharge package assessors 107 Complaints about the discharge team 107 Musgrove Park Hospital Patient Advice and Liaison Service (PALS) 107 District nursing service 111 Somerset Partnership NHS Foundation Trust: Mental health service 112 Obtaining a second opinion 113 Incorrect information in medical notes 114 Assessment for a social care discharge package 114 Social needs and health care plans 114 Safeguarding 115 Managing complaints 116 Involuntary dependency on prescribed drugs 116 General Practioners in Somerset 116 Knowledge of pancreatitis 116 Obtaining a second opinion 118 Adult social care plans 118 Managing medical practice complaints 119 Analgesia 119 Safeguarding 119 District nursing service 120 Hospital health and social care discharge packages 120 Medical practices and adult social care services 120 Out-of-hours medical service 120 Incorrect information in medical notes 121 NHS Continuing healthcare package 121 Somerset Clinical Commissioning Group 121 PALS and complaints team 121 NHS Continuing Healthcare 123 Observations 124 Section 5: Conclusions and recommendations 131 Taunton Deane Borough Council 131 Recommendation 1 132 Somerset County Council 132 Recommendation 2 132 Recommendation 3 133 Recommendation 4 134 Recommendation 5 134 Recommendation 6 134 Diabetes service 135 NHS Somerset Community Pain Management Service 135 Epilepsy service 135 Recommendation 7 136 Upper gastrointestinal surgery and medicine service 136 Hospital discharge social care packages 136 Taunton and Somerset NHS Foundation Trust governance 136 Recommendation 8 136 Recommendation 9 137 District Nursing Service 137 Recommendation 10 138 Somerset Partnership NHS Foundation Trust 138 Recommendation 11 138 General Practitioners 138 Somerset Clinical Commissioning Group 139 Recommendation 12 139 Recommendation 13 140 NHS England 140 Recommendation 14 140 Recommendation 15 140 Recommendation 16 140 Recommendation 17 140 General conclusion 141 Appendix 142 Executive summary This Review was undertaken to examine Mrs Brenda Prentice assertion that while she and her son (Mr Andrew Prentice) raised numerous complaints about his health and social care, since his tragic death on the 26 th July 2009 little has changed with respect to the various services he tried to access.1 Therefore this Review is not an investigation into the life and death of Mr Andrew Prentice even though it was commissioned because there were a number of involuntary failures in the processes, procedures and systems that provided his health and social care needs. 2 This Review is only concerned with the current state of institutional and local arrangements for the health and social care needs of a hypothetical patient who, suffering from the ravages of Hereditary Pancreatitis, 3 might need to use the same services that did not meet Mr Andrew Prentice’s nor his mother’s (Mrs Brenda Prentice) expectations. 4 Thus the Review was constructed to ensure that the enquiries made by the principal investigator encompassed the key difficulties experienced by Mr Andrew Prentice and these will be included in this report, where appropriate, to set the context for some elements of the Review. At the age of 15 Mr Andrew Prentice was diagnosed as suffering from acute pancreatitis 5 which causes those who develop the condition excruciating pain in the upper abdomen. The attacks continued and subsequently through the damage caused by repeated attacks he developed chronic pancreatitis for which there is no cure. 6 Because of the pain, urging from his wife, 7 and the fact he had developed insulin dependent diabetes Mr Andrew Prentice finally decided to have his pancreas removed in the hope of becoming pain free. 8 Unfortunately whilst he was pain free for a few months the agonising pain came back. 9 Subsequently his medical condition led to him becoming unemployed, 10 homeless 11 and bankrupt. 12 Thus Mr Andrew Prentice now not only sought medical help but also assistance with housing and social care services. However, in the first instance neither he nor his mother could find the information required in order to 1 Please see the full Terms of Reference for this review in Appendix to this report, …., Service review of current health and social care provision for people with pancreatitis , Somerset Clinical Commissioning Croup, 13 September 2017 2 See Appendix …., Service review of current health and social care provision for people with pancreatitis , Somerset Clinical Commissioning Croup, 13 September 2017 3 It should be noted that Hereditary Pancreatitis also appears to be referred to childhood or early onset pancreatitis. See Awano, H 1., Lee, T., Yagi. M., Masamune, A., Kume, K., Takeshima, Y and K. Iijima,’Childhood-onset hereditary pancreatitis with mutations in the CT gene and SPINK1 gene’, Paediatrics International , Vol.55(5), October 2013 at: https://www.ncbi.nlm.nih.gov/pubmed/24134754 abstract 4 See Appendix …., Service review of current health and social care provision for people with pancreatitis , Somerset Clinical Commissioning Croup, 13 September 2017 5 …., ‘Acute pancreatitis’, NHS Choices, 02/03/2015 at: https://www.nhs.uk/conditions/acute-pancreatitis/ 6 Goulden, M. R., ‘The pain of chronic pancreatitis: a persistent clinical challenge’, British Journal of Pain , Vol. 7(1), 2013 at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4590150/pdf/10.1177_2049463713479230.pdf p.8 7 Prentice, B., Andrew’s Story Living with Pancreatitis , Chipmunkapublishing, Essex, 2008, p.59 8 Prentice, B., Andrew’s Story Living with Pancreatitis , Chipmunkapublishing, Essex, 2008, p.54 9 Prentice, B., Andrew’s Story Living with Pancreatitis , Chipmunkapublishing, Essex, 2008, p.64 10 Prentice, B., Andrew’s Story Living with Pancreatitis , Chipmunkapublishing, Essex, 2008, p.81 11 Prentice, B., Andrew’s Story Living with Pancreatitis , Chipmunkapublishing, Essex, 2008, p.314 12 Prentice, B., Andrew’s Story Living with Pancreatitis , Chipmunkapublishing, Essex, 2008, p.166 know what services Somerset County Council and Taunton Dean Borough Council might be able to provide. 13 When Mr Andrew Prentice did eventually apply for housing from Taunton Deane Borough Council Housing Options he could not be housed immediately as he did not meet the legal eligibility criteria. 14 Similarly, when he applied for social care upon being assessed he was informed, on almost every occasion, that he did not meet the