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                       M.E. Local Survey 2024

                         Healthwatch Kingston
 

Since April 2021 Healthwatch Kingston has been running its ‘Pulse Check’ community engagement programme to work more closely with people living with long-term conditions in Kingston and listen to their views and experiences of health and social care services.

 

Healthwatch Kingston was approached by the Richmond and Kingston ME Group to help raise awareness of the issues faced by people living with Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), and Fibromyalgia, also called Fibromyalgia Syndrome (FMS).

 

In conversations with members of the Richmond and Kingston ME Group, Healthwatch Kingston learnt that ‘the voices of people living with ME/CFS and Fibromyalgia were not being heard, and that their conditions were largely misunderstood’. Some of the survey respondents with ME/CFS shared that they also had symptoms of Fibromyalgia and were being treated for both.

 

The findings from this Healthwatch Kingston Pulse Check community engagement work illustrate the need to not only raise awareness and understanding about ME/CFS and Fibromyalgia with the NHS and social care professionals, but also the importance of ensuring that people waiting for an ME/CFS and/or Fibromyalgia diagnosis are informed about the time it may take and that expectations are managed. Clarity for patients and professionals about ME/CFS and Fibromyalgia care pathways, between local GPs and specialist services, would help provide the reassurance required through joined up care for people living with intermittent symptoms from these long-term conditions.

 

If you would like to see the report, you can click the button below, or find it on Healthwatch Kingston’s website. 

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Previous Surveys 
 

Dr Megan Arroll:
'Richmond & Kingston Local Area Survey 2009'
R&K ME Group

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The aim of this survey is to increase understanding of the existence and experience of people living with ME (Myalgic Encephalomyelitis) in the Richmond and Kingston area. Our report aims to assist the general public, health professionals and other local services. It includes both quantitative statistical data which can be used as a basis for developing services to meet unmet needs, and qualitative data describing the devastating effect this illness can have on people and their families.

 

A total of 115 people with ME were invited to respond to the survey. Sixty-five surveys were completed, a 56.5% response rate. Using national incidence rates of 0.4% (NICE Guidelines 2007) we estimate the total number of people with ME in Richmond and Kingston to be around 1300. Many of the figures and experiences detailed here will be common to all people with ME but there are two significant provisos. Firstly, the age range of our respondents is 20-83 so no children with ME are represented, although 42% of all medically certified long term sickness absence from school has been ascribed to ME, this figure being well in excess of all other causes. Secondly, it is probable that this survey underestimates the number of severely ill people with ME as it is unlikely they would have the energy resources to complete it.

 

We want to thank Thames Community Foundation for funding the survey with a Grassroots Grant. Thank you, also, to Dr Megan Arroll of Simply Research who carried out this survey on our behalf and has been a pleasure to work with. Most of all we want to thank our members and other people with ME who, despite limited energy resources, chronic pain and ill health, completed the survey in the hope of improving understanding and services for people with ME in the Richmond and Kingston area.

 

Linda Webb, on behalf of Richmond and Kingston ME Group.

February 2010.

To access this document, please, click on the button below.

Dr Megan Arroll:
‘Richmond & Kingston Local Area Survey 2014’
R&K ME Group

In 2009 the Richmond & Kingston ME Group commissioned Simply Research to conduct a local area survey in order to assess its members on a range of topics including demographics, health status, welfare and benefits and a short evaluation of the Group’s activities and services. The survey received generous support from Grassroots Grants and Thames Community Foundation. Following funding applications made by the Group’s Treasurer Fernando Campo, grants were secured this time for a follow-up survey from Richmond Parish Lands Charity, the Royal Borough of Kingston and Skipton Building Society through their Grassroots Giving campaign for 2014. Therefore, in December 2013 Linda Webb approached Simply Research once again to provide the present report. Initially, this was to be comprised of the original quantitative items from the 2009 survey, but after discussion by the Richmond & Kingston ME Group Committee it was decided that new information was required. Therefore, comparisons to the 2009 results made within this report are limited to the items repeated in 2014. To access this document, please, click on the button below.

Dr Megan Arroll: ‘Richmond & Kingston Local Area Survey 2019’ R&K ME Group

In 2009 the Richmond & Kingston ME Group commissioned Dr Megan Arroll (at the time via Simply Research) to conduct a local area survey with generous support from Grassroots Grants and Thames Community Foundation in order to assess its members on a range of topics including demographics, health status, welfare and benefits and a short evaluation of the Group’s activities and services.

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Then for the Group’s 2014 follow-up survey, funding applications were made by Treasurer Fernando Campo, resulting in grants from Richmond Parish Lands Charity, the Royal Borough of Kingston and Skipton Building Society through their Grassroots Giving campaign. Simply Research was again approached to update the questionnaire, administer the survey, analyse the data and present the final report.

 

For this, the 2019 Richmond & Kingston ME Group follow-up survey, Dr Megan Arroll was asked a third time to conduct the research. Once again, the Group’s Treasurer Fernando Campo sought out funding and successfully secured financial support from Waitrose and Partners, Richmond Parish Lands Charity, Love Kingston and a special and generous contribution from Hampton Fuel Allotment Charity.

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The main body of the survey remained as per 2014 (which itself had updates from 2009) and included a new item regarding additional support from local authorities that members would like to see (section 4.3.15 in this report). However, as there have been changes within each survey and at each timepoint the volume of missing data differed, comparisons and conclusions in this report must be viewed with some caution. Therefore, were it was deemed appropriate such comparisons were made bearing in mind the limitations of the data.

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