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Mesothelioma UK: Its history and its future.
23 Jul 2018
The theme of June's Living Well with Mesothelioma meeting in Manchester was Mesothelioma UK. Mairead Dixon, a Mesothelioma UK nurse based at Wythenshawe Hospital talked us through the history and future of the charity.
Mesothelioma UK is a National charity which relies solely on donations to fund its work. It was started by Liz Darlison, a Nurse Consultant and Mick Peake, a Consultant in Respiratory Medicine, in Leicester who had identified that there was a gap in the information and resources available for those who had been diagnosed with mesothelioma. Liz and Mick wanted to change this and so with a lot of planning and hardwork Mesothelioma UK began.
Until 2017 the charity was based at the Glenfield Hospital in Leicester but has now opened its own premises.
They started with one nurse and now have 18. The charity hopes to increase their numbers in the next 3 years to 28. This will improve patient's access to a specialist mesothelioma nurse when they've been diagnosed with mesothelioma.
They hope to increase fundraising to £4 million per year.
Mesothelioma UK also has a helpline which is open 5 days per week from 8.30am to 4.30pm where patients or their families can ring up for advice. The advice ranges from access to clinical trials to the risk of family members developing asbestos related conditions from their partner or parents work with asbestos. The average length of time on the phone with any one caller is 17 minutes.
The charity has a number of trustees including Ruth Davies who is also a trustee of the John Pickering and Partners Charitable Trust.
They produce a quarterly newsletter Mesothelioma Matters which gives updates, information on clinical trials and recipes to try.
Travel insurance was also discussed and a number of sufferers mentioned insurers they had used including Insurewith and Fish and Mears. Mesothelioma UK will give out a list of suggested insurers when asked by patients. Sufferers are encouraged to go away on holiday abroad if they want to do so and are medically well enough.
A grant from the Government has also been used to put in place a Mesothelioma UK nurse and benefits advisor to support those who have been exposed to asbestos in the Armed Forces.
Mesothelioma UK also organises monthly meetings now around the country often in conjunction with local asbestos support groups. Lorraine Creech has been instrumental in setting up a meeting in Manchester in collaboration with Graham Dring at the Greater Manchester Asbestos Support Group (GMAVSG), in Liverpool in collaboration with John Flanagan at the Merseyside Asbestos Victims Support Group (MAVSG) and in Birmingham with Doug Jewell at the Asbestos Central England Support Group.
There may be a long way to go for mesothelioma but thanks to charities such as Mesothelioma UK there is hope for the future for mesothelioma sufferers and their families.
The Living Well with Mesothelioma Meeting in Manchester is held on the first Monday of each month at the Central Hall on Oldham St, Manchester between 1.30 and 3.30pm and is well worth attending for those in the local area diagnosed with an mesothelioma.