MACMILLAN LYMPHOEDEMA PROJECT FOR SCOTLAND – MLPS
The two year Macmillan Funded Lymphoedema Project for Scotland was hosted by the Health and Social Care Alliance Scotland (the ALLIANCE). The project came to an end in April 2014. This webpage is now being updated on a voluntary basis by the Project Manager to keep people informed of lymphoedema developments in Scotland.
Scottish Government: Letter from the Acting Chief Medical Officer, Chief Pharmaceutical Officer and Chief Nursing Officer Released (18/07/14)
A recent letter to Health Boards across Scotland recommends Lymphoedema Care in Scotland: Achieving Quality and Equity as a working reference tool. It provides guidance for Boards together with timescales for completion of key tasks. A full copy of the letter can be found at http://www.sehd.scot.nhs.uk/cmo/CMO(2014)22.pdf . MLPS has been recognised for it’s contribution in making this guidance a reality. It is hoped that this guidance will help to improve quality of access and provision of services across Scotland.
Glasgow Campaigners Raising Awareness of Lymphoedema
Please watch a moving STV interview highlighting difficulties experienced by children living with lymphoedema and the lack of support available to them and their families. The feature also includes video footage of Margaret O’Grady running in the Queen’s Baton Relay and an interview with her and Margaret Sneddon, Head of School for Nursing and Health Care, University of Glasgow.
ILF Conference 2014
The International Lymphoedema Framework Conference was hosted on 5-7 June 2014 by our colleagues at the University of Glasgow. Attended by 450 people from 29 different countries the Conference provided professionals and patients an opportunity to join together to share views and ongoing work from around the Globe.
Amanda Platt presented at the Patients Day on the development of Top Tips for the Self Management of Lymphoedema and also displayed a poster on developing a vision and priorities for lymphoedema care in Scotland.
ILF Awards
Two awards were received by members of the former MLPS Steering Group, these being:-
Amanda Platt – Patient Engagement & Rhian Davies – Digital Technology for Better Care
This was an excellent result for MLPS as our work has now received international recognition. Congratulations to both prize winners.
Commonwealth Games – Glasgow, 2014
Margaret O’Grady, MLPS Steering Group member, ran in the Queen’s Baton Relay on 23 June 2014 in Lanarkshire to raise awareness of lymphoedema.
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MACMILLAN LYMPHOEDEMA PROJECT FOR SCOTLAND – MLPS
The two year Macmillan Funded Lymphoedema Project for Scotland was hosted by the Health and Social Care Alliance Scotland (the ALLIANCE). The project came to an end in April 2014. The following information summarises the work of the project. “I would like to thank everyone who committed their time, energy and expertise to enabling the success of the project” (Amanda Platt, Project Manager).
Information about the National Project
The aims of the project were to improve services for people living with primary and secondary, cancer and non-cancer related lymphoedema through the development of resources, informed by people living with lymphoedema, and a National Lymphoedema Plan for Scotland. The latter was jointly developed with the Scottish Medical and Scientific Advisory Committee (SMASAC), Scottish Government.
Top Tips for the Self Management of Lymphoedema – A Guide
Top Tips were co-created with people living with lymphedema during two workshop sessions held in Inverness/Glasgow during 2012. The Guide was launched by Mr Michael McMahon MSP on 5th October 2012 as part of the ALLIANCE’s Self Management Week. The Guide is now in it’s 2nd Edition and is available to access on the Lymphoedema Scotland, NHS Inform and Macmillan Cancer Support Webpages. We are grateful to everyone who helped and supported the co-creation of the Guide.
Downloadable copies of Top Tips can now be downloaded by anyone directly from Macmillan Cancer Support’s Directory of Resources on Lymphoedema.
National Recommendations for Lymphoedema Care in Scotland: LYMPHOEDEMA CARE IN SCOTLAND: Achieving Equity and Quality
National recommendations from Scottish Medical and Scientific Advisory Committee (SMASAC) were jointly developed with the Macmillan Lymphoedema Project for Scotland. The report contains information on the nature and extent of the problem, diagnosis and management (including supported self management). It goes on to make a number of recommendations for SGHSCD, territorial Health Boards, NHS Education Scotland and Healthcare Improvement Scotland which it is believed will help improve both equity and quality of care for patients with this condition. It focusses on using evidence that is currently is available and highlights areas where further research is needed. The project is proud to have been involved in this work and especially in enabling people with lymphoedema to directly develop their ‘vision’ and ‘priorities for care’.
Our Vision
“Our vision is one in which people are
Getting the DETAILS right!
Prompt Diagnosis, Education and Treatment with Access to Information on Lymphoedema and Supporting individuals’ emotional and physical needs.”
Our Priorities
- Getting the best treatment
- Receiving a prompt diagnosis
- Not having to wait long for my treatment to start
- Being able to access treatment quickly if my condition worsens
- Receiving prompt assessment and treatment if I have symptoms of cellulitis
- Being able to obtain replacement hosiery as required
- Accessing specialist lymphoedema care locally
- My GP knowing about my condition and treatment
- My lymphoedema care provider knowing enough about my condition and treatment and
- Being supported to self manage my lymphoedema.
Follow this link to view and download a full copy of the SMASAC recommendations
Parliamentary Motion
On 17 January 2014 Mr Michael McMahon MSP presented a Motion to the Scottish Parliament requesting that they note the publication of ‘Lymphoedema Care in Scotland: Achieving Equity and Quality’ the national recommendations for lymphoedema care.
“Motion S4M-08793: Michael McMahon, Uddingston and Bellshill, Scottish Labour, Date Lodged: 17/01/2014
A total of, 29 cross-party MSPs supported this Motion. Further national guidance is anticipated during 2014.
Macmillan Lymphoedema Project for Scotland Parliamentary Reception – Thursday 12 December 2013
Mr Michael McMahon, MSP, recently sponsored a Parliamentary Reception for our project which was held at the Scottish Parliament, Holyrood. The reception was attended by MSPs, clinicians, service providers and people living with lymphoedema. Key Messages of the Event were to raise awareness of:-
- Cancer and Non-Cancer Related Lymphoedema are Increasing: An introduction to lymphoedema: who it affects (cancer and non-cancer related); it’s increasing prevalence in Scotland (cancer, obesity, increasing elderly population); prevention/reducing risk/early intervention; severity; impact on quality of life; and costs to NHS
- Improving Risk Reduction, Early Intervention are key to reducing the instance, severity and impact on quality of life and cost to NHS: Showcase work currently ongoing to support people in Scotland living with Lymphoedema: training and education to professionals and people at risk or living with lymphoedema can maximise the potential of self management.
- National recommendations for lymphoedema: Publicise the recently published SMASAC report ‘Lymphoedema care in Scotland: Achieving Equity and Quality’.
Presentations were given by: Mr Michael McMahon, MSP; Mr Ian Welsh, Chief Executive, the ALLIANCE; Amanda Platt, Project Manager, Macmillan Lymphoedema Project for Scotland; Mrs Margaret Sneddon, Head of School of Nursing and Health Care, University of Glasgow and Mrs Margaret O’Grady who provided a powerful and pragmatic description of living with lymphoedema
Information tables were hosted by the School of Nursing and Health Care, University of Glasgow; Macmillan Lymphoedema Project for Scotland; NHS Highland Macmillan Self Management Project; Patient Opinion, Scottish Lymphoedema Practitioners Network, NHS Tayside lymphoedema surgical team and Mrs Margaret O’Grady.
Below are some photographs of our colleagues from the School of Nursing and Health Care (Margaret Sneddon, Rhian Noble-Jones and Yolande Borthwick) and the organiser of the reception Amanda Platt with Margaret O’Grady, patient representative.
Update of NHS Inform Patient Information on Lymphoedema
The Macmillan Lymphoedema Project for Scotland identified that existing NHS Inform information on lymphoedema was not entirely relevant to the people of Scotland as it had been uploaded from NHS Choices in England. Following negotiation it was agreed the Macmillan Lymphoedema Project for Scotland would take responsibility for reviewing the existing information and updating it as required. The Project Manager, together with a colleague from the Scottish Lymphoedema Practitioners Network undertook the review. Once completed the information was shared with patient representatives to ensure that it was relevant. The updated information went ‘live’ on 11 December 2013
BLS Annual Conference
A poster and oral presentation were given at the Conference. The poster detailed our work on developing a ‘vision’ and ‘priorities’ for lymphoedema care in Scotland.
The oral presentation informed over 350 delegates from the UK and Europe about the Co-creation of Top Tips for Lymphoedema.
Spring Soiree
Friday 17th May 2013 saw another exciting event held for people with lymphoedema (of all types) and their carers here at the ALLIANCE. The morning comprised of working sessions focussed on the development of a ‘Vision Statement’ for lymphoedema care in Scotland’ and ‘priorities for future care’. These are included in ‘Lymphoedema Care in Scotland: Achieving Equity and Quality’ (link above). Participants also identified key themes for improvement. The afternoon session provided enjoyable presentations on Paths for All, ALISS, Patient Opinion, Simple Lymphatic Drainage and adapted Chi Gung/guided relaxation.
NHS Inform Lymphoedema Information Update – December 2013
The Macmillan Lymphoedema Project for Scotland has updated the lymphoedema information pages available from NHS Inform. The work was undertaken by the Project Manager, with input from colleagues at the Scottish Lymphoedema Practitioners Network and patient representatives. The updated information can be accessed HERE
DATES FOR YOUR DIARY 2014
Lymphaletics 2014 – Saturday 13 September 2014, Sheffield
The Children’s Lymphoedema Special Interest Group have announced the date for next year’s Lymphaletics. The day is for teenagers and children living with lymphoedema and their families. It all takes place at Pond’s Forge International Sports Centre in Sheffield. Further information available via: www.lymphaletics.weebly.com, CLSIG on Facebook and Kidslymph on Twitter. Places can be reserved now by emailing gilliancraig@nhs.net or telephoning 07771978648.
Continuing Professional Development
LYMPHOEDEMA INFORMATION
What is Lymphoedema?
The lymphatic system forms part of the body’s immune system and helps to fight infection, cleanse tissues around muscles, skin, fat and bone and maintains the balance of fluids in your body.
Lymphoedema is a collection of lymph fluid, in a part of the body, which cannot drain away. The build-up of fluid leads to a swelling (oedema). This is caused by a failure of the lymphatic system as the result of infection, trauma or damage, reduced mobility, poor circulation or cancer and its treatment. People can be born with the condition (primary lymphoedema) or can develop lymphoedema (secondary lymphoedema). The condition can affect any part of the body but more usually it is found in the arm or leg. Lymphoedema can affect people of all ages, including babies and children.
Difficulties experienced by people with lymphoedema include increased limb volume, higher risk of infection in the affected area, reduced function, skin problems and reduced quality of life due to the physical and psychological impact of the condition. Unfortunately lymphoedema is incurable and the longer it goes untreated, the more difficult it is to manage. However, with early detection and intervention it may be possible to keep the swelling and other related symptoms under control.
FURTHER INFORMATION ON LYMPHOEDEMA CAN BE OBTAINED FROM NHS INFORM HERE
What further information/support is available on lymphoedema?
The following web addresses will provide you with further information on the condition and support available.
Scottish Lymphoedema Practitioners Network: https://lymphoedema-scotland.org/
The Lymphoedema Support Network (LSN): The Lymphoedema Support Network webpage now includes ‘Health Unlocked’ which allows people to connect with others living with lymphoedema and the LSN Team, via an on-line community of over 650 people. Health Unlocked provides:
- A secure blogging platform where members can talk to each other and the LSN
- A question and answer section
- Full integration with other LSN online channels such as Twitter and Facebook
- A quick and easy way for the LSN to get your opinions on key issues
The British Lymphology Society: http://www.thebls.com/. You can download a postcard containing 5 things every GP should know about lymphoedema and 5 things every person with a swelling should know about lymphoedema. The postcard can be accessed HERE
Breakthrough Breast Cancer: http://www.breakthrough.org
Macmillan Cancer Support: www.macmillan.org.uk
MLD UK: www.mlduk.org.uk
Patient Opinion: www.patientopinion.org.uk
Breast Cancer Care: www.breastcancercare.org.uk
Prostate Cancer UK: www.prostatecanceruk.org
NHS Inform: www.nhsinform.co.uk/health-library/articles/l/lymphoedema/introduction
International Lymphoedema Framework: www.lympho.org
Health and Social Care Alliance Scotland (the ALLIANCE): www.alliance-scotland.org.uk is a third sector intermediary for a range of health and social care organisations. It hosts a number of projects including self management advice ‘My Condition, My Terms, My Life’ and ALISS (A Local Information System for Scotland) provides information on local groups and resources close to people’s own home.
If you require any further information regarding the project please contact Amanda Platt, Project Manager: amandaplattuk@yahoo.co.uk