Formerly known as the Myfanwy Townsend Melanoma Research Fund

Tag: Melanoma

Many people in West Sussex know of the Sharpthorne Carol Party, which isn’t surprising as this highly popular group is currently celebrating their 93rd anniversary. The choir, who are currently booking private parties this Christmas will be raising funds for St Catherine’s Hospice and the Melanoma Fund. This is their story:

“Ron and Doris Comber, whose family were Comber and Son (builders who still trade in Sharpthorne) organised a party of carol singers each Christmas to collect donations for local good causes, by traveling around the local area on a lorry bed with a piano strapped to the back. I was in the St. Margaret’s Church choir one Sunday morning when Ron Comber came in to ask if anybody would like to sing with their carol party, as several adult members had lost their voices from tonsillitis.

He assured us we would only be singing the well-known carols, so we all agreed to go along. A few weeks before Christmas we all got together and practised at Ron’s home, fine tuning our voices and having lots of fun. This was the start of an annual event that has continued until the present day.

Local hero
One of the early members, Harry Martin, always came with his collecting tin, which he did from 1932-1988. He was a popular and well known local character and was welcomed in the homes we visited and people enjoyed his sense of humour and local stories. He had been the chauffeur at Courtlands and later, petrol pump attendant at Sharpthorne Garage. (I have a photo of him with his tin at Chiddinglye when Earl Limerick gave a speech and presentation on his retirement.)The Reverend Michael and Sheila Allen called Harry ‘The Top Tin Rattler’.

Grand clients
One of Doreen’s first memories was singing at Dalingridge Place, which was very grand. “We all assembled in the hall around a big iron stove and when we were settled, the family magically appeared from the dining room. Lady Margaret Duckworth would lead the family in, and she and her three sons, their wives and guests were all in full evening dress. Lady Margaret always wore black with a lot of jewellery, and her daughters-in-law also wore a lot of jewellery and looked very grand. To us teenagers it was quite an impressive occasion!

Every year we went to the Furze family at Old House, where some of their family were visiting from America for Christmas. After we had sung, Mrs Pam Furze would play the piano and her grandchildren would sing to us, which gave us a break. In those days we sang to seven or eight houses per evening and also sang outside when requested, such as for Mrs Daw at the Vineyard.

Lord and Lady Kindersley at Plawhatch Hall invited us to sing every year and once or twice on the same evening as the Forest Row Band and Lifeboat Choir. So, more than once the band would be leaving as we arrived, which caused quite a bit of amusement and friendly rivalry.

Houses on fire!
The choir also had a few evenings when things didn’t go quite to plan. As they were driving up Horsted Lane from Ravenswood to Kixes there was a lot of black smoke ahead and they arrived at Kixes they found a fire engine and the oast house on fire! When they enquired whether they still wanted the choir to sing, Lady Wilkinson replied in a very calm voice “Do come in, we are having a problem with the oast, but we would still like you to sing.”

The show must go on!
Another memorable evening was held at Wickenden Manor when the choir were due to sing for the Astor family. They were short of transport that evening, so someone offered the use of his builder’s truck. As they descended down the steep drive, Harry Martin who was our driver, shouted “I think the brakes have failed”. Half way down the hill he turned the truck into a pile of brick rubble and the choir were very lucky to get out ,shaken but unharmed. Doreen recalls ‘Although the truck was in bits, we still joined the rest of the group to sing. ‘The show must go on’, as the saying goes.

Hair on fire
At an event in Hoathly Hill to sing for Robert Clarke’s family, there was a power cut and the whole house was thrown in darkness. A box of candles was produced and the choir did its best in the circumstances to see the music sheets. The worst was yet to come! “Suddenly there was a smell of burning hair. The tenor standing behind me was leaning forward to concentrate on his music and the flame of his candle was singeing my hair! The conductor, Tim Denby who lived at Tanyard, realised what was happening, before I did, and beckoned me to move forward, I was blown out, and we continued to sing!”

Unwelcome guests
One of the more unusual carol singing calls, was the night the choir tried to sing at Snegg’s Hill. As the choir drove up to the house it was well lit up on all four floors. They started to sing and it became very apparent they were not welcome, as starting with the ground floor, one by one the lights went out on each floor until the house was in complete darkness.

For a number of years we sang in St. Margaret’s Church as people were arriving for the Midnight Service on Christmas Eve. We also recorded a cassette in the church in October 1995 in memory of Steve Comber. Pearl Knight was the conductor at that time and arranged the recording.

Last call…
Our last venue every Christmas Eve was to Gravetye Manor. The guests came from the dining room to sit in the hall where we stood by the huge Christmas tree to sing to them. Mr Peter Herbert, the owner, then took us to a member’s room where we ate more mince pies and were served drinks. He always gave a speech of appreciation, along with a few of his memories of Carol Party visits over the years.”

The count up
After the last performance on Christmas Eve the tradition was to have the ‘Count-up’. The money collected was tipped from the collecting tins, and the final total was announced. Back in the 1940’s and 50’s we felt pleased to have collected £30-40. Now the average total is in the thousands.”

Taking bookings
Today the choir is still in high demand. Word of mouth has ensured their bookings, which still include private parties are constant. Michele Luck-Jacques continues as conductor and prepares the musical programme for the year, ensuring she has a well-balanced choir.

If you wish to raise money for a local charity cause and experience a truly traditional experience, why not book the choir for a private booking? They are available in the East Grinstead or Forest Row area between the 12th and 22nd December, please email Julia at juliawalker66@aol.com.

 

 

 

 

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Dear Stakeholders,

The Department of Health and Social Care has asked the National Institute for Health and Care Excellence (NICE) to produce guidance on using Nivolumab for adjuvant treatment of completely resected melanoma with lymph node
involvement or metastatic disease in the NHS in England.

The appraisal committee considered the evidence submitted by the company and the views of non-company consultees and commentators, clinical experts and patient experts. The recommendations were that Nivolumab is not recommended, within its marketing authorisation as monotherapy for the adjuvant treatment of completely resected melanoma in adults with lymph node involvement or metastatic disease.

Bristol-Meyers Squibb (BMS) is obviously disappointed with this decision as it was based on the report from the Evidence Review Group (ERG) which it believes does not reflect current UK clinical practice.  If this draft guidance does not recommend Nivolumab within its marketing authorisation, and this becomes the final guidance without any changes, it will mean that patients in England and Wales with melanoma with involvement of lymph nodes or metastatic disease who have undergone complete resection will not be able to access Nivolumab as adjuvant therapy.

BMS will obviously be responding robustly to the ACD to try to change the guidance. Whilst there remains a huge unmet need across the adjuvant melanoma population, they will remain committed to get this decision overturned by the 2nd ACM, scheduled for the 16th October.

Unmet patient need
The committee has acknowledged that people with fully resected melanoma are still at high risk of disease recurrence and that the potential curative aim of Nivolumab represented a substantial benefit to patients.

The committee raised questions about patients who may not relapse and as such the impact of adjuvant treatment with Nivolumab affecting the subsequent treatments for patients developing disseminated disease.

Clinical evidence
Because the clinical trial of Nivolumab versus Ipilimumab is still ongoing, data for overall survival are not yet available. This means the data are focused on recurrence-free survival.  Recurrence-free survival is important because increasing the length of time before tumours come back could lead to patients living longer and a better quality of life as relapse is associated with advanced disease.

The committee recognised Nivolumab was more effective than Ipilimumab in the clinical trial. However, the comparison with ‘watch and wait’ was conducted through an indirect treatment comparison. The committee noted some differences between the trials the comparison was based on and, so in their view, the results were uncertain.

Here at the Melanoma Fund, we believe that patients deserve to have an option to this stressful ‘watch and wait’ scenario that they will undoubtedly be left with if BMS fails to reverse this decision.  To provide this alternative course of treatment will create hope at a vital time for these stage 3 and 4 patients, and the Melanoma Fund will be making a submission, responding to with its own comments.

The closing date for all comments is 5.00pm on Friday 28 September.  If you able and willing to support this appraisal, simply register or sign in to your NICE account and leave your comments.  Full details of the consultation are online here: https://www.nice.org.uk/guidance/indevelopment/gid-ta10286/consultation/html-content-2.

 

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Here at The Melanoma Fund, our core mission is to raise awareness of melanoma, how to prevent it, recognise the diagnostic signs and educate on the importance of early detection.  To achieve this, in 2018 we organised Skin Health Clinics in the South East, working with the melanoma and skin cancer team at Queen Victoria Hospital and skin health experts at rtwskin in Tunbridge Wells.

Our final event this year was held at the beautiful Chartham Park Golf & Country Club in East Grinstead on the 13th August to thank the staff and their members for making us their club charity of 2018/19.

hosted by melanoma fund skin cancer charity
The event was gratefully sponsored by the Rotary Club of East Grinstead who are themselves a wonderful local charity, supporting local community events and causes. As well as opening up appointments to club members, we invited their friends and family and also the local people to pre-book private appointments.

The event format provided either a ten-minute skin check with one of our team of three melanoma surgeons who offered advice and spot checks for melanoma and other forms of skin cancer or a slot with a master pharmacist, who provided advice on sun protection and UV related skin damage.

Appointments were taken by 78 people with referral rates to GPs averaging at 25%, which proved how important this service is. Not only did we help detect skin problems early, we offered advice, aiming to make people think more carefully about the health of their skin and how to avoid problems.

Harry Townsend, the founder of the Melanoma Fund said “We could not have wished for a better outcome. Throughout the afternoon we had lots of one-to-one conversations with those who wanted to know more about melanoma and skin cancer, sun protection and what our charity does in the local community and beyond. In addition, we raised £350.00 from donations received from sales of Altruist SPF30 sunscreen.”

We would like to thank Chartham Park for hosting the day, our generous sponsors for making it possible, our team of medics who worked tirelessly and all those who attended this vital event.

For further information on the Melanoma Fund, to get involved in what we do or to help support our work visit www.melanoma-fund.co.uk.

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This week, the Melanoma Fund attended a Westminster Health Forum Keynote Seminar: Next steps for improving cancer care in England, at The Caledonia Club in South London. The event attracted a full house of delegates including oncologists, clinicians, scientists, pharmaceuticals, government bodies, universities, charities and patient groups.

Leading the way

The seminar was Chaired by Karen Lee MP, Vice-Chair, All-Party Parliamentary Group on Breast Cancer and Lord Saatchi, Chairman, Centre for Policy Studies and offered a number of highly influential and diverse speakers including; Professor Chris Harrison, National Clinical Director, Cancer, NHS England, Dr Rachael Liebmann, Vice-President, Communications, Royal College of Pathologists and Deputy Medical Director, Queen Victoria Hospital NHS Foundation Trust, Emma Greenwood, Director of Policy and Public Affairs, Cancer Research UK and Professor Mark Caulfield, Chief Scientist, Genomics England

Diane Cannon, Melanoma UK, Emma Greenwood, Cancer Research UK and Michelle Baker, Melanoma Fund

The focus

The event focused around the next steps for cancer care in England; looking at funding and access, workforce targets and progress on service redesign. This follows the following recent announcements:
• The former Secretary of State for Health and Social Care announcing an independent review into breast cancer screening
• The new Cancer Drugs Fund, which is expected to release at least £140 million into the NHS over the next five years
• Prime Minister’s commitment to use AI to diagnose at least 50,000 more people at an earlier stage within 15 years;
• Publication of Health Education England’s Cancer Workforce Plan, which makes plans for 200 additional clinical endoscopists and 300 reporting radiographers by 2021.

Michelle Baker, Lord Saatchi, Chair and Diane Cannon

Key discussion points included:
• Collaboration – findings from the 16 regional Cancer Alliances, their impact so far on the redesign of local cancer services, and further opportunities for collaboration;
• Early diagnosis – looking at the progress of the 28-day standard pilots and Rapid Diagnostic and Assessment Centres;
• The Cancer Drugs Fund – progress, value for money and priorities for improving patient care and access to cancer medicines;
• Prevention – public awareness, screening and patient data;
• Patient engagement – including key issues for survivorship, reducing variation and the potential impact of the quality of life metric;
• Research – looking at priorities, collaboration, funding and the impact of Brexit;
• Genomics and personalised medicine – its developing role in improving diagnosis; and
• Workforce – challenges for meeting workforce targets set out in the Cancer Workforce Plan.

Michelle Baker, Prof Mark Caulfield and Diane Cannon

Keeping informed

As a charity it is vital for us to constantly strive to generate a wider understanding of the current climate around cancer treatment and care in the UK. Understanding how trials work or don’t, the implications of screening, how Brexit will affect all of this, how the NHS is looking to improve and survive and how technology is changing the landscape.

Michelle Baker, CEO of the Melanoma Fund and Diane Cannon from Melanoma UK joined forces and approached a number of the Speakers and Chair’s from the meeting, providing some relevant insight what each respective charity does and how melanoma should be made more of a focus. Hopefully our attendance and intervention will provide some food for thought for the powers that be.

Michelle Baker, Prof Chris Harrison, National Clinical Director, Cancer, NHS England and Diane Cannon.

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This year has been an exciting and busy one for the Melanoma Fund.  We shook up our internal structure, changing our working name from the Myfanwy Townsend Melanoma Research Fund to make our name easier to say! We increased the size of our Trustee board and armed ourselves with an updated logo, branding and website.  Thankfully, we have retained our Chair, the unstoppable Harry Townsend, without whom this charity would not exist.  Read more about Harry here.

Support patients

We were invited to attend a wide number of patient and cancer focused panels and seminars, and again supported and attended the Melanoma Patient Conference, representing and cementing our place as one of the top melanoma charities in the UK. We retained our place on the Melanoma Taskforce and have reached out to other melanoma charities to increase our strength through unity.

Create national and community awareness

We successfully rolled out our Watch Your Back! sun protection for gardeners campaign for a third year, reaching an even wider audience, ensuring our messages are making a difference. We worked with 10 celebrity gardeners who promoted the message ‘Don’t be Ridiculous! – wear sunscreen’ featuring in 125 major garden centres.

We ran a national sunflower growing competition, generated funding for a Skin Health Clinic bus which visited six garden centres across Kent and Sussex, seeing over 1,500 people, promoting the importance of sun protection and early detection of melanoma, and referring 35% to their GPs.  Our summary video can be viewed here

Media support

We dramatically grew our on-line support, received TV coverage of our work on the BBC – see here, and appeared on hundreds of supporters blogs and online media sites. We were recognised as having one of the top 5 melanoma blogs in the UK and a top rating YouTube channel, and have consistently kept this work up, despite being dependent on small budgets and one paid member of staff.

Local support

Jeff, Aanna and Neil, the amazing club captains!

To top this off, we were approached by Jeff Morris at Chartham Park Golf Club to be their Club Charity 2018/19. At the time we never envisaged how this would lead to such amazing, conscience support. From raffles, auctions, club days, spinathons and a dragon boat racing team, the club is working relentlessly to raise as much as possible. To honour this work, we are pledging to put this donation to very good use which we know that clubs members will have full empathy with.

Create change!

The Outdoor Kids Sun Safety Code was created by the Melanoma Fund in 2014. It was, and remains, the only sun protection campaign, designed to support all those who work outdoors with children. The aim is to get those in charge to ‘Blow the Whistle on Sunburn’.

Partnered with the Youth Sports Trust, Association for Physical Education (AfPE), Child Protection in Sports Unit and sports coach UK, it is supported by over 120 national governing bodies of sport (NGBs) and a wide variety of overarching outdoor and coaching organisations.

This is not specifically a school sun protection campaign; this area is addressed and adequately supported by a number of schemes. The initiative is designed for children who spend a prolonged period of time in organised outdoor activity between March and October. This will be at holiday camps, club training, Outdoor camps, half term courses and those organised outdoor activities during the long school summer holidays that are growing in popularity due to working parents.

Due to resource issues, regrettably the campaign was not actively promoted or supported during 2017/2018 however, with the help of funds raised by Chartham Park, the aim is now to refresh the overall strategy and re-launch the campaign in Mid-March 2019, just before the spring holiday break.

The funds raised will help the charity pay for the resources to develop the new strategy, build a new website, create printed materials, communicate with the key supporters who have put their name to the campaign in past years and also to create new support and research new opportunities via a professional sports panel.

We believe that sun protection habits need to be created whilst young. We also believe that coaches and outdoor activity leaders are the ideal people to inspire children to do this.  They also need to ensure that sun protection is not just on the safeguarding table, but included in their activity (sunscreen doesn’t work in kit bags).

Just one sunburn can triple the chances of developing melanoma and this is more often than not triggered by a sunburn in childhood. We believe that everyone deserves the right to grow up with healthy skin, but this starts with healthy habits and this is where, with the help of this donation we can make a difference.

To find out more view our Outdoor Kids video here.

So, to answer the question, what can a small charity achieve?  We hope you will agree an awful lot, but only with the type of support that organisations like Chartham Park are willing to give. Maybe you have a business that could also do something to create a difference?  Please contact Michelle, the CEO on 07989551046 or michelle@melanoma-fund.co.uk, she would be delighted to hear from you!

Finally…

We do hope you can all join us at the Skin Health Event at the club on the 11th August, kindly sponsored by The Rotary Club of East Grinstead.  This would be a great time to come meet us and find out more about what we do and why we do it.  We have the team from Queen Victoria Hospital offering skin checks and also rtwskin offering complexion analysis.  We will be offering bottles of sunscreen for a small donation and lots of advice.

From everyone at the Melanoma Fund…a heartfelt thank you. Visit www.melanoma-fund.co.uk for further details.

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Michelle Baker – CEO – Melanoma Fund

Having worked for big, blue chip organisations for over 30 years, I cannot tell you how proud I am to now work for a small melanoma charity that creates BIG impact, making a real difference to people’s health and lives. Never before have I held such passion for my work, felt so fulfilled or have I been more proud of the things I have helped this charity achieve.

Small but mighty!

The Melanoma Fund is a small national charity that raises awareness of melanoma, with just one paid member of staff, a hard-working Founder (Mr Harry Townsend) a team of amazing Trustees and a small handful of volunteers.  In #smallcharityweek it’s vital that we all recognise the amazing work of charities like the Melanoma Fund, which shows the real impact small organisations can have, without the massive overheads that bigger charities are liable for.

Vital work

In the last five years we have created two national campaigns; the Outdoor Kids Sun Safety Code and Watch Your Back!, both raising awareness of the importance of sun protection to high risk groups. We have joined the Melanoma Taskforce; a parliamentary lobbying committee, provided support to various patient groups, funded effective melanoma research, worked with local authorities to raise awareness and teamed up with other charities to organise skin checks across the South East to help our mission of PROTECT, DETECT, PREVENT. And much more.

Success needs support

The more we reach out, the more we achieve… the more opportunities we find present themselves to us, as does the demand for the charity’s resources and in turn our financial demands. Unfortunately, being such a (very) small charity, we don’t have the marketing might to reach out for funding in the same way that big charities do, yet a relatively small increase in funds would make such a big difference.

Add up the hand-full of  small melanoma dedicated charities in the UK (who are all doing incredible work in their own fields) and together we are together creating MASSIVE impact on this terrible disease, but without funding, we cannot survive.

In spite our size, Melanoma Fund has carved out a niche in its work in the UK and leads the way in terms of our campaigns which target people who are at high risk of developing skin cancer. This includes working with bigger organisations to get our messages across and seeking wider support, but this all takes resources.

The Melanoma Fund, and the countless other small charities in the UK who do great work, are always looking for support, whether as a volunteer, regular donor or for people to go out and challenge themselves in our name.

Get in touch

If you have been touched by melanoma and want to help us make a difference and support a charity that tells it as it is, why not find out more about what we do?  Visit at www.melanoma-fund.co.uk or email me at michelle@melanoma-fund.co.uk.

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