Agenda item

To receive a briefing paper from the Mesothelioma UK Charitable Trust.  Ghislaine Boyd, Business Development Manager for the Trust will present the report.  

Ghislaine Boyd, Business Development Manager presented a briefing paper from the Mesothelioma UK Charitable Trust which is based at the Glenfield Hopsital.  The briefing note was previously circulated with the agenda for the meeting.

In addition to the points made in the briefing note the following comments were noted:-

a)         There were 2,500 cases diagnosed in the UK each year compared to 3,400 in the United States.  The condition was a cancer of the lining of the lung or abdomen caused by asbestos.

b)         30 new cases were diagnosed each year in Leicester, Leicestershire and Rutland. The University Hospitals of Leicester NHS Trust dealt with 150 new referrals each year as it was centre for excellence for the condition. 

c)         There was currently no cure for Mesothelioma and the average the prognosis for life expectancy, once diagnosed, was 12-18 months.

d)         Mesothelioma UK was launched in 2004 with the support of Macmillan Cancer Support and the Charity became independent when it was launched in 2009.

e)         The Charity had 12 nurses nationally of which 2 were currently independently funded.  All 12 nurses would be funded by the Charity from 2017.  Nurses were funded to work 2 days per week and it was hoped to ultimately increase the number of nurses to 18.

f)          The Charity would fund research projects in conjunction with the British Lung Foundation totalling £300,000 in the next two years.

g)         Fundraising was currently on target to reach £500,000 for the year with 80% from donations and 20% from sponsorship.

h)        The Charity’s welfare officer provided advice on benefits and compensation as well as helping to complete the associated forms with family members.  The hours of this post had recently been increased to reflect the increased activity in this area.

i)          The Charity organises a local monthly luncheon club activity for both Mesothelioma and lung cancer patients and their carers.  A specialist nurse is always available to discuss clinical issues, which has been found to reduce pressures on GPs and hospital staff.

Following comments and questions from Members, it was noted that:-

a)         The majority of new cases are aged 60 years old but there was an increase in the number of patients aged 30 years old.  There had also been rare instances of children and spouses being diagnosed with the condition after coming into contact with work clothes and inhaling the fibres on them.

b)         There was only limited treatment available through the NHS generally, and specialist treatment was only provided by a few centres around the country.  Specialist treatment for conditions involving the abdomen was only available at Basingstoke due to its extremely specialised nature.

c)         Financial support could involve government and industrial disease compensation and death benefits.  The process could be complex and there were numerous forms to complete.  It was beneficial to start the claim for compensation, shortly after diagnosis as this increased the levels of compensation available.  There was no financial support for funeral costs but support was given to relatives to help with dealing with administrative matters when the patient died.  All deaths from the disease were referred to the Coroner’s Office and the Charity also provided support in dealing with this process.

d)         The level of diagnosis in Leicester was relatively low compared to dockland areas and heavily industrialised areas of the north east.

e)         The number of new cases was predicted to rise until the mid 2020’s and then decrease.

f)          The Charity had worked with the Health and Safety Executive, Fire Brigades, asbestos awareness groups and the construction industry to promote education and preventative measures.  A campaign involving DIY suppliers had not been well received.

g)         There was no test to see who may be vulnerable to the condition and patients were normally diagnosed in the later stages of the condition and particularly through emergency admissions rather than GP referrals.

The Chair suggested that the Charity could distribute literature through the Ward Meetings and Richard Morris, Leicester City Clinical Commission Group, offered to arrange for the Charity to attend one of its bi-monthly meetings to address GPs on the condition.  Representatives of EMAS also offered to discuss how they could promote the work of the Chairty.

AGREED:

1)    That Ghislaine Boyd be thanked for her informative and educational briefing.

2)    That the Charity be invited to distribute information leaflets on Mesothelioma at Ward meetings.

3)    That arrangements be made for Council staff to be made aware of the condition.

4)    That the Commission write to representatives of the local DIY trade to encourage them to take part in publicity campaigns with the Charity.