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  1. 1. DISTRICT WIDE (BRADFORD & AIREDALE) PALLIATIVE CARE IN NEUROLOGICAL CONDITIONS WORKING SUB GROUP Minutes of Working Group Held on 17th May 2006 at 1.30 pm at Manorlands Hospice Present: Belinda Batten (BB), Georgina Haslam (GH), Sarah Craven (SC), Liz Watson (LW), Carolyn Zeyrek (nee Winterburn) (CZ), Judith Mitchell(JM), Jane Pearce (JP), Sharon Armitage (SA) Apologies: Rory O’Connor, Linda Wilson, Christine Matthews (Sarah Craven represented Christine) Date of next meeting: Wednesday 19th July 2006 1 – 3pm. Location: Manorlands Hospice, Day Therapy Unit Room (Hebden Road, Oxenhope, Keighley, West Yorkshire. BD22 9HJ). Sandwiches & drinks will be provided. Agenda Item Issue Action Action required Review Reviewed (Who) Date by 1. Background to 10 Years to fully implement recommendations the NSF for Long 11 quality requirements ALL Familiarise self with 19 July Working Term Conditions Healthcare Commission & Commission for NSF for Long Term 2006 Sub March 2005 – Social Inspection will carry out improvement Conditions March Group Overview provided by reviews to check progress. 2005 particularly Belinda Batten. quality requirement 9 Implementation: Key areas to focus on which you can find 1). Quality requirements on page 48 2). Building capacity in staffing, facilities, equipment, range of services for patients with long term neurological conditions. 3) Integration of service delivery – using joint budgets. No extra money, except £4 million over 3 years 2004- 2007 for End of Life Programme – note in Bradford/Airedale the money is being used to roll 1
  2. 2. out ICP for dying to community patients. Neuroscience Networks may be formed – (like cancer networks) – PCT lead – for planning, commissioning, promoting good practice – (clinical guidelines, referral protocols etc). 2. How Working Sub Group will fit in with (a) This meeting is a subgroup of the district GH Georgina to liaise 19 July Working other PCT & Hospital wide planning meeting that is being with Chris Durkin to 2006 Sub Neurological groups. coordinated by Chris Durkin at BRI. There is a suggest a one day Group need for clarification of the areas of work the scoping event hosted district wide planning meeting & other possible by PCT should be subgroups are going to undertake to avoid arranged. Possibly duplication. Progress reports of this subgroup in September 2006. will be fed back to both the district wide planning Georgina to feedback meeting, plus the district wide palliative care co- to subgroup at next ordination service. meeting. (b) Need for identification of current stake holders & service providers of current neurological services/provision in geographical area (Bradford & Airedale). 3. Membership of Working Sub Group (a) Group membership composition discussed. Sub Need to ensure correct representation district LW (a) Compile ASAP Group wide – both statutory & voluntary, service user standardised involvement, plus members who have PCT invitation letter – influence. Note need to ensure membership is inviting new not unmanageable due to volume of numbers. members (as per updated membership list at end of minutes) in time for 19 July 2006 meeting. 2
  3. 3. Suggested use of Palliative Care Co- ordination Service letter headed paper. (b) Dr Belinda Batten (Chair of meeting 17 May LW (b) Chair meetings 19 July Working 2006) will not be attending further meetings due 2006 Sub to relocation out of area. Dr Linda Wilson will Group Chair subsequent meetings. (c) Service user involvement in sub group. CZ (c) Carolyn to identify ASAP Working possible service user Sub & make initial contact Group to ascertain interest level. If positive response, Carolyn to forward details onto Linda Wilson for standardised invitation letter to be sent. 4. Aims of sub group 1. Produce and take forward a district wide Familiarise self with 19 July Working – initial thoughts. action plan based on recommendations of ALL proposed action plan 2006 Sub the NSF for long term conditions quality & Belinda’s Group requirement 9: Palliative Care (note Draft comments in pink Action Plan discussed at meeting – type. Bring thoughts please refer to draft action plan at end of to next meeting for minutes – type in pink are suggestions for further discussion. further discussion at the next meeting made by Belinda Batten) 3
  4. 4. 2. Report progress to District wide (neurology) steering group for NSF for LTC’s, plus District wide palliative care co-ordination service. 3. Consider requests made to the group from others to examine other areas of palliative care and neurology. To be known as a working group. 5. Audit Report Belinda Batten & Linda Wilson compiling. Present audit 19 July Working Findings not available for this meeting. Will be LW findings. 2006 Sub presented by Linda at subsequent meeting. Group 6. AOB Admin support for minutes required LW Request Admin In time Working support from Angela for Sub Fidgeon Palliative meetin Group Care Co-ordination g 19 Service. July 2006 7. Next Meeting Provisional Agenda: Wednesday 19 July • Agree Terms of Reference 2006 • Feedback from Georgina Haslam re:PCT scoping exercise event • Possible inclusion of Neurological Alliance Speaker. • Development of Action Plan. • Audit findings. Updated Membership List for: DISTRICT WIDE (BRADFORD & AIREDALE) PALLIATIVE CARE IN NEUROLOGICAL CONDITIONS WORKING SUB GROUP (Names in Red are people who have been identified as possible additional members) 4
  5. 5. Name Role Email Address & Phone Comments Belinda Batten Consultant in Chaired meeting 17 Palliative Medicine May. No longer part of sub group due to move out of area. Linda Wilson (Chair) Consultant in Airedale Hospital Apols sent for 17 Palliative Medicine May Meeting Rory O’Connor Consultant in Airedale Hospital Apols sent for 17 Rehabilitation May meeting. To be Medicine invited to next meeting. Georgina Haslam PCT Airedale PEC New Mill Attended meeting Chair 17 May Maggie Helliwell PCT To be invited to attend next meeting. Peter Cory To be invited to attend next meeting. Andy Hanson GPSI To be invited to attend next meeting. Belinda Marks City PCT To be invited to attend next meeting. Sue Nugent S&W PCT To be invited to attend next meeting. Dr Busby or member Neurologist, St To be invited to of neurology Lukes Hospital, attend next meeting. rehabilitation team. Bradford. Sarah Craven Marie Curie Hospice Marie Curie Hospice Attended meeting Physio Maudsley Street, 17 May Bradford. BD3 9LE Christine Matthews Marie Curie Hospice Marie Curie Hospice Apols sent for 17 Day Therapy Leader k Maudsley Street, May, colleague Bradford. BD3 9LE Sarah Craven 5
  6. 6. attended instead Liz Watson MS Nurse, Bradford Ground Floor Ext Attended meeting Block, St Lukes 17 May Hospital, Bradford. BD5 0NA Zoe Ridewood Parkinson’s Disease Queensbury Health To be invited to next Nurse Specialist Centre, Russell meeting Road, Queensbury. Bradford BD13 2AG Carolyn Zeyrek (nee Lead for Specialist Millennium Park Attended meeting Winterburn) Rehab/MS (APCT), Station 17 May Road, Steeton, Keighley. BD20 6RB Tel 01535 338751 Judith Mitchell D/N Team Leader P.C.C. Attended meeting Airedale Hospice at AGH 17 May Home Keighley BD20 6TD Tel 01535 294656 Debbie Crossland Hospice at Home, Judith Mitchell to Bradford. invite to next meeting Kath Dobson Hospice at Home, Judith Mitchell to Bradford invite to next meeting Jane Pearce MS Nurse, APCT Mellennium Park Attended meeting (APCT), Station 17 May Roac, Steeton. Keighley. BD20 6RB Tel 01535 338755 Sharon Armitage Day Therapy Unit DTU Attended meeting Manager, Manorlands Hospice 17 May Manorlands Hospice Hebden Road, 6
  7. 7. Oxenhope West Yorkshire BD22 9HJ Tel 01535 642308 Cordless 107. Annamaria (Anna) MND Regional Care Pending C/O Loraine Webster Attending meeting Conlan Advisor Beech House 19 July 2006 333 Leeds Road Idle, Bradford, West Yorkshire. Tel: 01772 821783 (M) 078765 75029 Service User To be identified by Carolyn Zeyrek 7
  8. 8. NSF FOR LONG TERM CONDITIONS ACTION PLAN (NEUROLOGY) DRAFT ACTION PLAN – Palliative Care Quality Markers of good practice Current position Rating Action plan & lead require ment 9 1. Planning / integration of • Palliative care neurology • 2 • 1st meeting May 17th of palliative Services :Specialised group to report to 2 care neurology group (LW, BB , neurology, rehab and district wide groups – JP, CW, SC, LW, SA) palliative care MDT’s and 1.NSF long term providers – work together to conditions steering group • List of key individuals in provide care for people with and 2. Palliative care Co neurology and palliative care advanced long term -ordination service services and establish formal neurological conditions planning group links – due to changes in both • Nominated palliative care services personnel ? to defer lead for neurology taking forward until Autumn district wide (LW) 2006 • Informal links between staff in palliative care and neurology 2. Service Provision : • Specialist palliative care • 3 • Audit of neurology patients a)Access for people with services district wide are referred to specialist pall care 8
  9. 9. advanced long term available regardless of services district wide 2003-5 neurological conditions to diagnosis (LW, BB) –complete by May palliative care in all settings ,  – hospice – in patient, day 17th according to choice and need care, out patient • Review of current service  hospital palliative care team provision and needs assessment  community palliative care for respite and day care provision team (patients’ homes and ? who to lead nursing homes) • Explore models of care to Existing Services above…but are address needs identified these known by GP’s, DN’s, hospital ? joint funded doctors etc. ?need to audit. ? how to cope with protracted nature • General palliative care – of illness & unpredictability of hospice at home service to terminal stage supplement care available from primary health care • ? MS register in Bradford team in last few weeks of life allow pall. Care needs • Respite care – probably assessment questions. inadequate provision district wide – currently 2 beds for palliative care patients of all diagnosis in Bradford City- being piloted .Lack of clear information on other provision district wide • Day Care – probably lack of provision particularly for younger patients Q’s: 1. Do pts & professionals know we have open access regardless of diagnosis? Any other barriers to equal access based on need? Possible danger of raising 9
  10. 10. expectations without being able to meet need. 2. Gaps in service provision now ? respite ? day care ? special pts gps eg MND who would all benefit from early intervention 2. Service Provision • District wide roll out of • 3 Palliative care b) Quality : In line with  Gold standards framework Co ordination national best practice  Integrated care pathway for Service to guidelines dying Continue  Nice guidelines for to roll out supportive and palliative care 2004 (Cancer peer review Our subgroup? not need to pick this up 2005 with action plan for Bradford and Airedale hospital PCT ) 3. Training / Education • Palliative care education • 2 Palliative care neurology group to discuss on Neurologists and neuro rehab coordinated district wide 17th May and liaise with palliative care co teams are trained in and includes education for ordination service palliative care skills specialists and non Education subgroup chairperson to take All staff providing care to specialists – some ad hoc forward plan (BB, LW) people with advanced sessions on neurological neurological illness trained disease management in management of these • No regular programme of conditions palliative care palliative care education provision specifically tailored to neurology staff What do they want? Who to target? How best to provide it? 10
  11. 11. • No regular programme of Neurology training for specialist palliative care staff What do we want? How to provide it? ? Use list of topics in Q9 PSI 1. S. Control – spasticity, neuro. Pain 2. Palliative interventions – NIPPV & PEG 3. Mental Capacity, consent, advance directives 4. Communication, swallowing probs etc. BB Belinda Batten LW Linda Wilson JP Jane Pearce CW Carolyn Winterburn SC Sarah Craven LW Liz Watson SA Sharon Armitage Rating 1.No Progress 2.Some 3.Significant Progress 4.Achieved Last Updated : May 2006 11