Monday, 19 April 2010

Dear Earl Lowe and JWF............

Dear Sir,

I am writing to thank you so much for the invitation for my husband and I to attend the Presidents Annual Dinner at the House of Lords in June. I was so excited as I ripped open the envelope with the crest on it and read the first few paragraphs. I don't get the opportunity to go out much nowadays, especially not to black tie dinners.

However, I'm afraid I shall have to decline this invitation. You see, not only am I a supporter of the James Whale Fund but I am also a patient and sufferer of this dreadful disease - renal cell carcinoma. I have been fighting advanced kidney cancer for three and a half years with operations, procedures, treatments and drugs I have had to fight tooth and nail to gain funding for. During this time I have, on behalf of the JWF, made a promotional film about RCC - 'Kidney Cancer, Jane's Journey' - taken part in several awareness events, written many media articles on the subject and have been heavily involved in the fight to secure funding from NICE for kidney cancer drugs.

Having cancer is in itself is an expensive business. I no longer am able to work. My husband has had to take a lot of time off work to both look after me and take me to my many and various hospital appointments - plus pay for the pleasure of parking there - and we still have 2 children living at home. So paying 120 pounds for a meal is totally out of the question, plus the cost of travel and over night accommodation we would need.

I am guessing I'm not the only patient to receive this invitation and whilst I can appreciate the need to raise funds for the JWF, sufferers of the disease are perhaps not the best place to start. Believe me if I were to win the lottery next week the JWF would be the first charity to benefit from it but until then I do all I can in my own way.

I wish you all the best for the dinner in June and hope you raise a lot of money - and thank you once again for the invitation,

Yours faithfully,

Jane Thompson



(I wonder if I will receive a reply?)

14 comments:

Deb said...

Bravo Jane...great reply you have written!
I'm betting they will send you free tickets to attend and ask you to be a guest speaker...

You go girl!!!

Debbie

嘉容嘉容 said...
This comment has been removed by a blog administrator.
Jane said...

A good reply Jane. Now send a copy with a covering letter to that same magazine which published the interview about you last year. Perhaps you could put this guy's contact details up here on your blog so that we, your readers, may give him the benefit of our opinions?

Jan said...

Very well said Jane ,that should get some sort of reaction ,Hopefully a free lunch with all expences paid ,Good luck with this ....love Jan xx

tinkerbell said...

Way to go Jane!!cant wait to see the reply you get, it should come with an invitation for both you and Martin to dine free!!!thinking of you in thought and prayer

JWF said...

Dear Jane,



The Fund was saddened to see that our recent invitation from Earl Howe to attend the President's Dinner has caused you such distress. You will know from working with us that we receive support from many areas including that of the patient, some of whom support us financially and others by way of giving freely of their time to attend such events as NICE appeals when Kidney Cancer drugs have been rejected.

We are always conscious that it is important that we never exclude patients or their carers from being invited to an event that the Fund holds and last years President's Dinner did include, amongst the eighty guests, a number of patients and their partners.

I hope that you will see from this reply that it was not the intention of the Fund to cause offense to anyone, especially patients. But rather to treat patients as individuals allowing them the opportunity to support our work should they wish to.

I will of course be personally writing to you with a more detailed response.



With best wishes

Nick Turkentine

Chief Operating Officer
James Whale Fund

ADB said...

Jane,
Well done in formulating such an appropriate response. I am pleased to note the reply from JWF (immediately above me), and hope your concerns will be allayed in its private response to you.

By the way, you need to delete the Chinese spam response in comment #2

Guido

Zoe said...

Good on you hun,what a complete cheek even asking for monies for a fund raiser event,they know very well that money will also be raised at the event itself.It is a shame you have had to decline such an important event.Zoe xxxx

Funnyface said...

Hello Jane,
Brilliant reply that you penned there. However, its all so very political, maybe before they send out these invitations they need someone who is more human and understand to go thru them.
| hope you are enjoying some pain free time at the moment.
Big Luv
Jaynee X

Missie said...

Very well written. Have a good rest of your week.

nick said...

excellent letter, Jane. Couldn't improve a single word.

And good to see you getting fired up and angry, too. An excellent sign.

nick said...

Excellent letter, Jane. Couldn't improve a word.

And good to see you getting fired up and angry. An excellent sign.

Andy said...

Good for you!

LYN said...

YOU GO GIRL!!