Scottish Partnership for Palliative Care: Cross Party ParliamentaryGroup

CROSS-PARTY GROUP IN THE SCOTTISH PARLIAMENT ON PALLIATIVE CARE

Minute of Meeting held on Wednesday 9 June 2004

Committee Room 4, Scottish Parliament Headquarters

Present:
Michael McMahon, Convener (in the chair) MSP, Hamilton North & Bellshill
Dennis Canavan Vice Convener MSP, Falkirk West
Margaret Ewing MSP, Moray
Margo MacDonald MSP, Lothians
Nanette Milne MSP, North East Scotland
Marie Armstrong, Strathcarron Hospice
Dr T F Benton, St Columba's Hospice
Moira Boyle, NHS Forth Valley
Jacquelyn Chaplin, Marie Curie Cancer Care
Professor Frank Clark, Strathcarron Hospice
Rev Stuart Coates, Strathcarron Hospice
Sylvia Cox, Scottish Dementia Centre
Elaine Cruikshank, Macmillan CNS, Dundee
Lorraine Dallas, Breast Cancer Care Scotland
Rhona Else, St Columba's Hospice
Shirley Fife, NHS Lothian
Ellen Finlayson, Sargent Cancer Care for Children
Debra Gordon, NHS Lothian University Hospitals Division
May Grafen, NHS Lothian
Gordon Gray, NHS Lothian
Sarah Grotrian, Marie Curie Cancer Care
Kate Hagart, Accord Hospice
Wilma Halley, Macmillan CNS, NHS Highland
Margaret Key, University of Glasgow
Murdina MacDonald, NHS Fife
Helen Macpherson, Lymphoedema Patient
Ruth McCabe, Macmillan Cancer Relief
Joan McDowell, University of Glasgow
Dorothy McElroy, Ardgowan Hospice
Sharon McGinley, St Margaret's Hospice
Lorna McGoldrick, NHS Lothian University Hospitals Division
Helen Newport, NHS Dumfries & Galloway
Dr James Rodgers, NHS Borders
Margaret Sneddon, University of Glasgow
Elizabeth Thomas, St Margaret's Hospice
Jane Todd, General Medical Council
Marie Todd, Glasgow PCT
Yvonne Victory, Fife Acute Healthcare Trust
Lynn Watret, Glasgow PCT
Anne Williams, University of Glasgow

In Attendance:
Pauline Britton, Scottish Partnership for Palliative Care
Kevin Thomson, Scottish Partnership for Palliative Care
Patricia Wallace, Secretary Scottish Partnership for Palliative Care

Apologies:
Lord James Douglas Hamilton MSP, Lothians
Eleanor Scott MSP, Highlands & Islands
Aileen Anderson, Ayrshire Hospice
Wendy Arthur, SW Department, City of Edinburgh Council
Dr Rosaleen Beattie, St Vincent's Hospice
Elizabeth Caroll, WOSMCN for Palliative Care
Dr Bruce Cleminson, NHS Shetland
Linda Cliff, NHS Shetland
Gillian Craig, NHS Grampian
Dr Rosalie Dunn, NHS Lanarkshire
Tom Gault, St Andrew's Hospice
Ian Gibson, Macmillan Cancer Relief
Gillian Harley, NHS Lothian University Hospitals Division
Mark Hazelwood, MS Society Scotland
Joan Hemphill, Prince & Princess of Wales Hospice
Jenny Henderson, Alzheimer Scotland - Action on Dementia
Carol Horne, TakTent Cancer Support Scotland
Linda Kerr, NHS Ayrshire & Arran
Dr Mhoira Leng, NHS Grampian
Kitty Mason, NHS Lothian - Social Services
Dr Sheila McGettrick, Prince & Princess of Wales Hospice
Maria McGill, Highland Hospice
Marie McGill, Scottish Huntington's Association
Claire McLaughlin, NHS Ayrshire & Arran
Susan Munroe, Marie Curie Nursing Service
Jane Neilly, NHS Ayrshire & Arran
Dr Clive Preston, NHS Fife
Anne Robb, NHS Tayside
Ralph Roberts, NHS Borders
Catriona Ross, St Andrew's Hospice
Bob Shorter, NHS Lanarkshire
Elaine Stevens, RCN Palliative Nursing Group
Debbie Thomson, Cancer Link Aberdeen & North
Liz Walker, NHS Forth Valley
Jenny Whelan, CancerBACUP Scotland

1. Welcome & Apologies:
Michael McMahon MSP welcomed everyone to the meeting.

Apologies as noted above.

2. AGM and Election of Office Bearers:
Please see attached sheet for minute of the AGM and election of office bearers. (Appendix 1)

3. Minutes of last meetings:
The minutes of the meetings of 12 November 2003 and 21 January 2004 were adopted as a true record of each respective meeting.

4. 4.1 Matters arising: Wednesday 12 November 2003
4.1.1 Prescription charges (item 4)
It was noted that the consultation process re prescription charges and other relevant issues was ongoing and as yet there were no clear definitions re exemptions.

Michael McMahon asked that the continued support from the Cross Party Group on this issue be recorded in the minute.

ACTION: Agenda Item for next meeting PB/PW

4.1.2 Parliamentary motion (item 6)
Following on from a presentation at the Cross Party Group in November 2003, Michael McMahon had raised a motion in the Scottish Parliament highlighting the work done by the Specialist Palliative Care Overnight Nursing Service in Lanarkshire, which enabled patients with end-stage cancer to be cared for and die at home if that was their wish. Michael had asked the SEHD to recognise the need for similar schemes to be rolled out across Scotland.

After a joint meeting between the Cross-Party Group on Palliative Care and the Cross-Party Group on Cancer in the Scottish Parliament in January 2004, Kenneth McIntosh MSP raised four palliative care related questions in the Scottish Parliament.

4.2 Matters arising: Wednesday 21 January 2004
There were no matters arising.

5. Presentation and Discussion:
'Lymphoedema - a neglected area of health care?

Anne Williams, Lymphoedema Specialist Practitioner, University of Glasgow and Helen Macpherson, a lymphoedema patient.

Professor Frank Clark CBE introduced and summarised the presentation.

Frank spoke briefly about the causes, problems and treatment of lymphoedema in Scotland.

He referred to current services for managing lymphoedema and explained that the presentation aimed to clarify issues by highlighting key points, suggesting possible future considerations and raising awareness among MSPs.

Anne Williams is based at the University of Glasgow where a Graduate Diploma in Chronic Oedema Management has been available since 2002, providing a structured education pathway for key-worker and specialist lymphoedema practitioners.

Anne spoke on behalf of the Scottish Lymphoedema Practitioners Group. Developed in 2002 to provide support to practitioners, the group had representation from each health board in Scotland. They were presently undertaking an audit of new referrals to lymphoedema services. Proposals were being developed for a service mapping exercise and a needs analysis co-ordinated through the Scottish Lymphoedema Practitioners Group and the University of Glasgow. Findings from these studies would help inform future service development and help establish lymphoedema treatment and care, delivered on an equitable basis and to a consistently high standard throughout Scotland.

Anne explained that lymphoedema was a chronic and progressive condition presenting as limb swelling that could also affect the adjacent trunk. Studies showed that lymphoedema occurred in around 25% of women after breast cancer treatment representing over 840 new cases of arm lymphoedema in Scotland each year. Secondary lymphoedema could also occur in gynaecological and genitourinary cancers and in malignant melanoma, and could be a particular problem in the palliative care setting. It could arise in non-cancer patients due to venous disease and ulceration, through infection, surgery or a number of other causes.

It was pointed out that a recent study had shown that significant numbers of people with lymphoedema did not receive appropriate treatment and indicated that 29% of those with lymphoedema had suffered an acute infection in the previous year, with 27% requiring hospital admission for intravenous antibiotics. The literature clearly showed the substantial economic burden and reduced quality of life in this group. Early diagnosis and treatment had been shown to be paramount in improving quality of life and avoiding the need for hospital admission due to acute infection.

Anne highlighted that lymphoedema was not curable but the swelling and associated symptoms could be effectively managed using a combination of treatment including a specialised massage called manual lymphatic drainage, compression therapy with bandages and/or elastic garments, meticulous skin and preventative care and an exercise programme. Ongoing support and advice over the long term was also vital for these patients.

Commonly, those with mild to moderate swelling were fitted with compression garments and taught self-treatment strategies including self-massage by nurses and physiotherapists, educated to key-worker level. Those with more severe and complicated lymphoedema often required an intensive 2-3 week course of daily massage, bandaging and exercises in order to reduce swelling and improve symptoms. These patients required treatment from practitioners with specialist skills in manual lymphatic drainage and multi-layer bandaging.

Anne informed the group that the extent of the lymphoedema problem in Scotland had not yet been fully established. Lymphoedema services had developed mainly in cancer and palliative care centres but services had been fragmented and inequitable, with limited standardisation of treatment and care throughout the country. Until recently, the main treatment centre had been in Glasgow, taking patients from all over Scotland. However, Health Boards such as Grampian and Forth Valley had responded to the need for a comprehensive local service providing care for people with cancer and non-cancer related lymphoedemas.

An outline of this presentation is attached as Appendix 2.
A lymphoedema briefing paper is attached as Appendix 3.

Helen Macpherson talked about her experiences as a lymphoedema patient.

Discussion:
It was reported that there had been significant progress made in the treatment of lymphoedema over the past ten years and a profound difference in the quality of life could now be made in a short space of time because of early referrals to appropriate clinicians. It was highlighted that lymphoedema management was organised holistically with the patient requiring a complete package for the fullest effect.

Education was very important and training offered for practitioners was excellent but the stumbling block was diagnostics - making people aware of appropriate referrals was problematic. Wrong referrals and pointless investigations would lead to wasted resources as would prescribing inappropriate garments. The level of awareness about lymphoedema would need to be raised with robust systems put in place to ensure early appropriate referrals and treatment.

It was pointed out that patents were dependent upon their GPs recognising symptoms and making early appropriate referrals. Early treatment would minimise future costs to NHS Boards.

The Forth Valley model had been refined and improved. For a small modest investment and after only 14 months, lymphoedema patients were now managed internally. Potential savings on prescribed antibiotics, wrong garments, etc was significant.

Margaret Ewing MSP suggested that those MSPs present should obtain signatures for a Members' Business Debate to raise awareness of lymphoedema in the Scottish Parliament highlighting the current situation and asking the Minister about future plans for improving services. Any questions to be put forward to the Minister would be identified in collaboration with the Scottish Partnership for Palliative Care.

ACTION: Dennis Canavan MSP, Margaret Ewing MSP, Michael McMahon MSP and Nanette Milne MSP to meet and discuss how to take this forward in Parliament. DC, ME, MMcM & NM

It was agreed that there were inequities in the pattern of lymphoedema service distribution in Scotland due to a lack of defined standards to ensure uniformity of quality. It was suggested that a useful way forward would be for an approach to be made to NHSQIS with a view to developing common standards for lymphoedema management. This would enable NHS Boards to examine their practice and to develop plans to bring them into line with the standard. The group accepted this suggestion and Anne Williams, on behalf of the Scottish Lymphoedema Practitioners Group, offered her support in the development of the standards.

ACTION: Frank Clark / Pat Wallace to take this forward. FC/PW

In the meantime it was agreed that awareness could be raised via high quality, self-help literature that was available for patients, as was support from lymphoedema support groups and networks.

There was a distinct lack of awareness of lymphoedema amongst those in general practices and appropriate literature could be sent via the health board network, also making them aware of the lymphoedema support groups and networks.

Michael thanked Anne and Helen for their very powerful and informative presentation and for facilitating the discussion that followed.

6. Any other competent business:
6.1 The House of Commons Select Committee on Health (England and Wales) had set up a new Palliative Care Inquiry on 23 January 2004, to inquire into the provision of hospice and palliative care by the NHS and by independent services, including the related support services of local authorities and other agencies for both adults and children.

The inquiry would examine the extent to which the needs and wishes of patients of different ages were taken into account, including their care choices, ethnicity, cultural and spiritual beliefs. It would address the financing, governance, staffing, locations and quality of palliative care.

It is hoped that the committee would produce a report of their findings in July 2004.

7. Date of next meeting
Wednesday 17 November 2004 at 5.30 pm in the new Scottish Parliament building.

There being no further business, the meeting closed at 7.00 pm.

CROSS-PARTY GROUP IN THE SCOTTISH PARLIAMENT ON PALLIATIVE CARE Minute of Meeting held on Wednesday 9 June 2004 Committee Room 4, Scottish Parliament Headquarters Present: Michael McMahon, Convener (in the chair) MSP, Hamilton North & Bellshill Dennis Canavan Vice Convener MSP, Falkirk West Margaret Ewing MSP, Moray Margo MacDonald MSP, Lothians Nanette Milne MSP, North East Scotland Marie Armstrong, Strathcarron Hospice Dr T F Benton, St Columba's Hospice Moira Boyle, NHS Forth Valley Jacquelyn Chaplin, Marie Curie Cancer Care Professor Frank Clark, Strathcarron Hospice Rev Stuart Coates, Strathcarron Hospice Sylvia Cox, Scottish Dementia Centre Elaine Cruikshank, Macmillan CNS, Dundee Lorraine Dallas, Breast Cancer Care Scotland Rhona Else, St Columba's Hospice Shirley Fife, NHS Lothian Ellen Finlayson, Sargent Cancer Care for Children Debra Gordon, NHS Lothian University Hospitals Division May Grafen, NHS Lothian Gordon Gray, NHS Lothian Sarah Grotrian, Marie Curie Cancer Care Kate Hagart, Accord Hospice Wilma Halley, Macmillan CNS, NHS Highland Margaret Key, University of Glasgow Murdina MacDonald, NHS Fife Helen Macpherson, Lymphoedema Patient Ruth McCabe, Macmillan Cancer Relief Joan McDowell, University of Glasgow Dorothy McElroy, Ardgowan Hospice Sharon McGinley, St Margaret's Hospice Lorna McGoldrick, NHS Lothian University Hospitals Division Helen Newport, NHS Dumfries & Galloway Dr James Rodgers, NHS Borders Margaret Sneddon, University of Glasgow Elizabeth Thomas, St Margaret's Hospice Jane Todd, General Medical Council Marie Todd, Glasgow PCT Yvonne Victory, Fife Acute Healthcare Trust Lynn Watret, Glasgow PCT Anne Williams, University of Glasgow In Attendance: Pauline Britton, Scottish Partnership for Palliative Care Kevin Thomson, Scottish Partnership for Palliative Care Patricia Wallace, Secretary Scottish Partnership for Palliative Care Apologies: Lord James Douglas Hamilton MSP, Lothians Eleanor Scott MSP, Highlands & Islands Aileen Anderson, Ayrshire Hospice Wendy Arthur, SW Department, City of Edinburgh Council Dr Rosaleen Beattie, St Vincent's Hospice Elizabeth Caroll, WOSMCN for Palliative Care Dr Bruce Cleminson, NHS Shetland Linda Cliff, NHS Shetland Gillian Craig, NHS Grampian Dr Rosalie Dunn, NHS Lanarkshire Tom Gault, St Andrew's Hospice Ian Gibson, Macmillan Cancer Relief Gillian Harley, NHS Lothian University Hospitals Division Mark Hazelwood, MS Society Scotland Joan Hemphill, Prince & Princess of Wales Hospice Jenny Henderson, Alzheimer Scotland - Action on Dementia Carol Horne, TakTent Cancer Support Scotland Linda Kerr, NHS Ayrshire & Arran Dr Mhoira Leng, NHS Grampian Kitty Mason, NHS Lothian - Social Services Dr Sheila McGettrick, Prince & Princess of Wales Hospice Maria McGill, Highland Hospice Marie McGill, Scottish Huntington's Association Claire McLaughlin, NHS Ayrshire & Arran Susan Munroe, Marie Curie Nursing Service Jane Neilly, NHS Ayrshire & Arran Dr Clive Preston, NHS Fife Anne Robb, NHS Tayside Ralph Roberts, NHS Borders Catriona Ross, St Andrew's Hospice Bob Shorter, NHS Lanarkshire Elaine Stevens, RCN Palliative Nursing Group Debbie Thomson, Cancer Link Aberdeen & North Liz Walker, NHS Forth Valley Jenny Whelan, CancerBACUP Scotland 1. Welcome & Apologies: Michael McMahon MSP welcomed everyone to the meeting. Apologies as noted above. 2. AGM and Election of Office Bearers: Please see attached sheet for minute of the AGM and election of office bearers. (Appendix 1) 3. Minutes of last meetings: The minutes of the meetings of 12 November 2003 and 21 January 2004 were adopted as a true record of each respective meeting. 4. 4.1 Matters arising: Wednesday 12 November 2003 4.1.1 Prescription charges (item 4) It was noted that the consultation process re prescription charges and other relevant issues was ongoing and as yet there were no clear definitions re exemptions. Michael McMahon asked that the continued support from the Cross Party Group on this issue be recorded in the minute. ACTION: Agenda Item for next meeting PB/PW 4.1.2 Parliamentary motion (item 6) Following on from a presentation at the Cross Party Group in November 2003, Michael McMahon had raised a motion in the Scottish Parliament highlighting the work done by the Specialist Palliative Care Overnight Nursing Service in Lanarkshire, which enabled patients with end-stage cancer to be cared for and die at home if that was their wish. Michael had asked the SEHD to recognise the need for similar schemes to be rolled out across Scotland. After a joint meeting between the Cross-Party Group on Palliative Care and the Cross-Party Group on Cancer in the Scottish Parliament in January 2004, Kenneth McIntosh MSP raised four palliative care related questions in the Scottish Parliament. 4.2 Matters arising: Wednesday 21 January 2004 There were no matters arising. 5. Presentation and Discussion: 'Lymphoedema - a neglected area of health care? Anne Williams, Lymphoedema Specialist Practitioner, University of Glasgow and Helen Macpherson, a lymphoedema patient. Professor Frank Clark CBE introduced and summarised the presentation. Frank spoke briefly about the causes, problems and treatment of lymphoedema in Scotland. He referred to current services for managing lymphoedema and explained that the presentation aimed to clarify issues by highlighting key points, suggesting possible future considerations and raising awareness among MSPs. Anne Williams is based at the University of Glasgow where a Graduate Diploma in Chronic Oedema Management has been available since 2002, providing a structured education pathway for key-worker and specialist lymphoedema practitioners. Anne spoke on behalf of the Scottish Lymphoedema Practitioners Group. Developed in 2002 to provide support to practitioners, the group had representation from each health board in Scotland. They were presently undertaking an audit of new referrals to lymphoedema services. Proposals were being developed for a service mapping exercise and a needs analysis co-ordinated through the Scottish Lymphoedema Practitioners Group and the University of Glasgow. Findings from these studies would help inform future service development and help establish lymphoedema treatment and care, delivered on an equitable basis and to a consistently high standard throughout Scotland. Anne explained that lymphoedema was a chronic and progressive condition presenting as limb swelling that could also affect the adjacent trunk. Studies showed that lymphoedema occurred in around 25% of women after breast cancer treatment representing over 840 new cases of arm lymphoedema in Scotland each year. Secondary lymphoedema could also occur in gynaecological and genitourinary cancers and in malignant melanoma, and could be a particular problem in the palliative care setting. It could arise in non-cancer patients due to venous disease and ulceration, through infection, surgery or a number of other causes. It was pointed out that a recent study had shown that significant numbers of people with lymphoedema did not receive appropriate treatment and indicated that 29% of those with lymphoedema had suffered an acute infection in the previous year, with 27% requiring hospital admission for intravenous antibiotics. The literature clearly showed the substantial economic burden and reduced quality of life in this group. Early diagnosis and treatment had been shown to be paramount in improving quality of life and avoiding the need for hospital admission due to acute infection. Anne highlighted that lymphoedema was not curable but the swelling and associated symptoms could be effectively managed using a combination of treatment including a specialised massage called manual lymphatic drainage, compression therapy with bandages and/or elastic garments, meticulous skin and preventative care and an exercise programme. Ongoing support and advice over the long term was also vital for these patients. Commonly, those with mild to moderate swelling were fitted with compression garments and taught self-treatment strategies including self-massage by nurses and physiotherapists, educated to key-worker level. Those with more severe and complicated lymphoedema often required an intensive 2-3 week course of daily massage, bandaging and exercises in order to reduce swelling and improve symptoms. These patients required treatment from practitioners with specialist skills in manual lymphatic drainage and multi-layer bandaging. Anne informed the group that the extent of the lymphoedema problem in Scotland had not yet been fully established. Lymphoedema services had developed mainly in cancer and palliative care centres but services had been fragmented and inequitable, with limited standardisation of treatment and care throughout the country. Until recently, the main treatment centre had been in Glasgow, taking patients from all over Scotland. However, Health Boards such as Grampian and Forth Valley had responded to the need for a comprehensive local service providing care for people with cancer and non-cancer related lymphoedemas. An outline of this presentation is attached as Appendix 2. A lymphoedema briefing paper is attached as Appendix 3. Helen Macpherson talked about her experiences as a lymphoedema patient. Discussion: It was reported that there had been significant progress made in the treatment of lymphoedema over the past ten years and a profound difference in the quality of life could now be made in a short space of time because of early referrals to appropriate clinicians. It was highlighted that lymphoedema management was organised holistically with the patient requiring a complete package for the fullest effect. Education was very important and training offered for practitioners was excellent but the stumbling block was diagnostics - making people aware of appropriate referrals was problematic. Wrong referrals and pointless investigations would lead to wasted resources as would prescribing inappropriate garments. The level of awareness about lymphoedema would need to be raised with robust systems put in place to ensure early appropriate referrals and treatment. It was pointed out that patents were dependent upon their GPs recognising symptoms and making early appropriate referrals. Early treatment would minimise future costs to NHS Boards. The Forth Valley model had been refined and improved. For a small modest investment and after only 14 months, lymphoedema patients were now managed internally. Potential savings on prescribed antibiotics, wrong garments, etc was significant. Margaret Ewing MSP suggested that those MSPs present should obtain signatures for a Members' Business Debate to raise awareness of lymphoedema in the Scottish Parliament highlighting the current situation and asking the Minister about future plans for improving services. Any questions to be put forward to the Minister would be identified in collaboration with the Scottish Partnership for Palliative Care. ACTION: Dennis Canavan MSP, Margaret Ewing MSP, Michael McMahon MSP and Nanette Milne MSP to meet and discuss how to take this forward in Parliament. DC, ME, MMcM & NM It was agreed that there were inequities in the pattern of lymphoedema service distribution in Scotland due to a lack of defined standards to ensure uniformity of quality. It was suggested that a useful way forward would be for an approach to be made to NHSQIS with a view to developing common standards for lymphoedema management. This would enable NHS Boards to examine their practice and to develop plans to bring them into line with the standard. The group accepted this suggestion and Anne Williams, on behalf of the Scottish Lymphoedema Practitioners Group, offered her support in the development of the standards. ACTION: Frank Clark / Pat Wallace to take this forward. FC/PW In the meantime it was agreed that awareness could be raised via high quality, self-help literature that was available for patients, as was support from lymphoedema support groups and networks. There was a distinct lack of awareness of lymphoedema amongst those in general practices and appropriate literature could be sent via the health board network, also making them aware of the lymphoedema support groups and networks. Michael thanked Anne and Helen for their very powerful and informative presentation and for facilitating the discussion that followed. 6. Any other competent business: 6.1 The House of Commons Select Committee on Health (England and Wales) had set up a new Palliative Care Inquiry on 23 January 2004, to inquire into the provision of hospice and palliative care by the NHS and by independent services, including the related support services of local authorities and other agencies for both adults and children. The inquiry would examine the extent to which the needs and wishes of patients of different ages were taken into account, including their care choices, ethnicity, cultural and spiritual beliefs. It would address the financing, governance, staffing, locations and quality of palliative care. It is hoped that the committee would produce a report of their findings in July 2004. 7. Date of next meeting Wednesday 17 November 2004 at 5.30 pm in the new Scottish Parliament building. There being no further business, the meeting closed at 7.00 pm.

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