An Update with nothing but GOOD NEWS

Firstly our grateful thanks to the Harold Dasantos Fund for it's kind donation of £2000 towards Diane's medication. The cheque was presented to us on the 15 November 2008 at a fund raising dance.

Secondly we received a letter from the Hampshire PCT stating that as of NOW Diane's treatment will be entirely paid for by the NHS. YES WE WON.

As this is not restrospective I intend to use monies raised so far to pay off any NHS debts and any funds left over will be donated to a charity. I shall post details of payments made on this site in due course.

Dear All

Since my last posting an awful lot have happened.

• Di has had a second set of scans which showed continued improvement
• The Dinner on Victory took place and raised just over £5000 (Thank to all who helped and attended)
• I have secured another top venue for a repeat performance
• We have all been instrumental in changing minds on this issue. In fact an annoucement was made by Right Hon Alan Johnson in the House week before last potentially scrapping the Co-payment laws. I say potential because it wasn't clear cut.
• Di has had a few minor set backs but she is holding her own.
• Last but not least there is a funding raising due in Afro Carribbean Club on Saturday 15 Nov.

I will try to keep this sight a little more up to date in the future

The News

For those who havent seen it, here's our lovely Di in The News
http://www.portsmouth.co.uk/news/39Look-at-me--I39m.4351324.jp

Prize Draw Results

Firstly thank you all very much for your efforts in making the Raffle the success it has been.

The results are as follows:

CAMPAIGN FOR SORAFENIB TO SAVE A LIFE

Results of Prize Draw on 2 August 2008 at Eden Vauxhall
Winning No.
First (Car).....................................................5611
Second (32” TV) ............................................19541
Third (Nintendo) ..........................................18023
Fourth (Bicycle) ...........................................4714
Fifth (£50 Voucher).......................................17980
Sixth (£50 Voucher)......................................18038
Seventh (Milestone Family Ticket) ............19629
Eighth (Milestone Family Ticket) ..............0958

Meet Your Navy Raffle Sale and Update

Firstly Di and I would like to thank all of you who helped at the MYN event this weekend. The weather was rather hot and we were placed in a bit of a sun trap, but we struggled through it al and sold 1535 tickets. Our particular thanks to Caz who gave up some annual leave to give us cover for the whole of the period.

You would have all heard the good news last week but I shall just quickly say that Di's scan results were excellent and we are now looking forward to the appeal to the PCT.

Total sales so far satnds at 9768 tickets sold with 30232 of the original target to go.

Raffle Update

Tickets sold 6896 with 33104 to go

Raffle Update

Dear All

Just a quick note to say that Di and myself will be away for a week as of Friday the 4 July for a trip on the Oxford Canal.

We shall return rejuvenated and plan on starting to push the next big event.

We shall be on the mobiles so we are not totally out of reach.

Total Raffle Sales now stands at 6509 with 33491 to go. We have much to do if we are to reach the target.

Update on the IOW Run/Walk

The figures for the IOW run were:

Total Raised £1537 of which £1172 were Raffle tickets sale.

Di and myself would like to thank all who took part and every single one of you you sponsored us.

Sultan Summer Show Event

Dear All

Firstly thank you all who helped to make the Sultan summer show a great success. The final total was £800 bringing the Raffle sales total to 5694 with 34306 to go.

A special thank you to Les and Gwen for travelling all the way from the West country to be with us and I am sure you will all join me in thanking Les for giving Di a much needed boost.

Mind you if I lived in the West Country I would use any excuse to take a break!

You would have all read the email I sent last night about the PCTs which use Sutent and Nexavar routinely. I am not yet sure how to best use this info so I have decided to ponder on it for a few days.

Raffle Sales update

4549 Sold 35451 to go

Raffle Sales Update

Tickets sold 4269 with 35731 to go.

Raffle Sales Update

Tickets sold 3786 with 36214 to go.

On a positive note: Sales plus Funds raised at various functions means that we are now into profit (in other words the funds for the major prize is secured). So lets get serious and sell those tickets. Any ideas on how to increase sales welcomed.

Friends of Diane's Fund Raising Event

Thank you to all of Di's friends and colleauges who helped in making the fund raising Craft Fair in Alverstoke Parish Hall on the weekending the 1 Jun 08 a great success. The total monies raised was £2770.39 of which £337.00 were ticket sales.

A special thank you to the 2 Elaines for the organising of this special and touching event

Ticket Sales now stands at 3441 with 36559 to go.

Here are a few pictures of the Fund raising team.

The Times

For all those who didnt get chance to read the article in the times heres the link http://www.timesonline.co.uk/tol/news/uk/health/article4087576.ece. Great article although I dont think Tel was too pleased they added a year on to his birthday!!

Collingwood FG 7 June 08

Picture of Di's Support party at the Collingwood Field Gun June 08. The team did a magnificent job sold 513 Tickets and raised £6.00 with Guess the value in a bottle. Special thanks to Deb who was carrying an injury and the 2 younger members for thier staying power. Di and me are lucky to have them as friends. The ticket sales bring the total to 3356 tickets sold with 36644 to go.

The Motley Crew and Ted

The IOW running and support crew after a 2 Day gruelling Run/Walk of the island. Amount raised will be posted when counted.

Raffle Update

2588 Sold 37412 to go

Friends of Diane Fund Raising Event update

Di and Ange would like to thank both Elaines and all Di's colleauges from her last job for the time and effort put into the fund raising weekend. It was a great success.

Thank you all

Raffle Update

2488 Sold 37512 to go

Lottery Sales Update

Tickets sold 2102 with 37898 to go

IOW Run/Walk

Congratulations to all runners and supporters. In spite of really bad weather at the outset the team went on to complete the around the IOW Run/Walk. They completed over 40 miles on Monday and the rest on Tuesday. What's more they did it as a team.

Hope to have more details and pictures tomorrow.

Lottery Sales Update

1581 sold with 38419 to go.

IOW Run/Walk

I know you will all want to join me in wishing the 5 Runners and 3 Supporters the very best of luck tomorrow and Tuesday. Remember while we are enjoying the Bank Holiday they will be in a world of pain. I shall certainly have a drink to them.

Next Event

26 and 27 May IOW Walk/Run – Led by Diane and Ange's sons supported by friends
5 Walkers/Runners with 3 supporters on bicycle
Starting Ryde – clockwise, stop at Freshwater (Buttercup House B&B), back to Ryde.

To support this event contact us via this Blog or email sontel@hotmail.com

Latest Raffle Sales

1361 Sold 38639 to go

Raffle Sales

Tickets are now available. Contact sontel@hotmail.com to get yours


CAMPAIGN FOR SORAFENIB TO SAVE A LIFE
WIN A FANTASTIC PRIZE AND RAISE AWARENESS OF THE N.I.C.E SITUATION
TOP PRIZE NEW VAUXHALL CORSA
2nd Prize 32” Flat Screen TV
3rd Prize Nintendo Wii 4th Prize Ladies Quality Bicycle
ANY MANY OTHER FANTASTIC PRIZES
TICKETS £1 EACH
RAFFLE TO BE HELD ON SAT 2nd AUGUST 2008 at 1300
AT EDEN VAUXHALL, NEWGATE LANE, FAREHAM, HANTS
LICENCE NO: GBC031 Winners will be notified in The Local News 4,5,6th Aug 08 and at this Blog site

Latest Update

Just a quick note to let everyone know that the Raffle tickets have been ordered and should be ready for sale on Wednesday 16 April.

The IOW running team will be accommodated in the Buttercup B&B Freshwater IOW on the 26 May 08 and Di's work colleagues will be holding a Fund raising event on the 31 May and 1 June at the Parish Hall in Alverstoke (I will give more details later)

Raffle Venue and Charity Launch

Dear All

I have finally secured a Venue and Date for the grand draw. It is at Eden Vauxhall in Fareham on 2 Aug 08 at 1300 Hrs. I am planning on Charley drawing the first prize and Antonia drawing the second.

I have also managed to secure the HMS Victory for a charity function in September 2008. I envisage using this opportunity to launch what will I hope become a national charity to provide funding for as many as possible for anyone who finds themselves in a similar situation to Di. We will all have to work extra hard in obtain prizes for a charity auction on that night. This will be our one and only opportunity to bring this to the national arena. We have the time so lets make it count. Hopefully the little we do on that night will make a big difference to many.

The News.

Anyone who missed my mums story in the news can look at a smaller version here;

http://www.portsmouth.co.uk/news/Savings-and-home-will-go.3906915.jp


Tel x

Strategy Paper

Background
Most of the citizens of the United Kingdom are under the misconception that the National Health Service is obliged to prolong an individual’s life for as long as possible and in so doing give that individual the best possible quality of life and if what we read and hear in the media is to be believed euthanasia is an illegal act in the UK. What is not generally realised is that your Primary care Trust (PCT) can withhold medication which is licensed for use but not National Institute for Clinical Excellence (NICE) approved. There are currently over 3000 individuals in the UK for who are caught in this trap. They require some form of licensed medication right now but cannot have it because it is not NICE approved. There is a good chance that most of these will die and sadly in some cases this could happen days before the drug becomes NICE approved. What’s more the whole process involved in denying people these drugs is probably more expensive than just giving them the drugs for a trial period furthermore the cost to the tax payer would probably be in the region of a mere £1.00 per tax payer per year.
Aims
The aim of this paper is to set out the goals and intentions of the group formed to assist Diane Winston in her fight against Kidney Cancer and the Portsmouth PCT while trying to obtain Sorafenib a potentially lifesaving drug and to raise awareness nationally and challenge the government’s use of NICE.
The group is currently made up of a collection of family members and close friend, however it is envisaged that in the fullness of time as awareness is raised and this becomes a national objective the group will grow and contain members across the United Kingdom

Group Title
Group to be known as: BeNICE which stands for Before NICE.

Aims of the Group

1. To raise awareness of the plight of Diane Winston who has found herself in the situation of needing such a drug.
2. To raise funding for Diane to purchase the drug Sorafenib until NICE gives approval for this drug.
3. To raise awareness of the plight and number of people who find themselves in the situation of needing immediate supply of life saving drugs which are licensed for use but not yet NICE approved.
4. To provide temporary funding for individuals who find themselves in immediate medical need of a drug which has been licensed for use but not yet NICE approved
The strategy to be adopted will be a 3 Phase methodology. The first is to raise awareness and obtain initial supply of drugs using Diane and Lionel’s retirement savings. This will be followed by fund raising events to bolster funds to give Diane a further years supply (by which time NICE would have considered the use of Sorafenib). And finally to raise awareness nationally and challenge the government use of NICE.



Milestones to be met during each Phase are as follows:
1. PHASE I – Raise Awareness locally and obtain initial medication
a. Start to raise awareness locally
b. Engage with the Navy to enlist support
c. Engage with media
d. Gather Support Group
e. Organise finances to fund initial treatment
f. Engage with PCT to initiate process to obtain funding
g. Develop communication methods
h. Commence work to formalise BeNICE as a charity
2. PHASE II- Raise awareness to wider audience and raise funds for 12 Months supply
a. Utilise any positive engagement carried out in Phase I
b. Write/Post fund raising letters and carry out visits
c. Engage with the media as appropriate
d. Engage with accountant
e. Obtain Raffle Tickets
f. Decide on Raffle prizes
g. Design and order tickets
h. Request representation at HMS Sultan’s Summer Show (21 – 22 Jun 2008)
i. Request representation at Navy’s Meet Your Navy (25, 26 July 2008)
j. Organise locations for sale of ticket
k. Organise Audit process
l. Organise raffle funds collection process
m. Organise Bank account for funding
n. Obtain Lottery License
o. Obtain Public Liability Insurance
p. Create BeNICE webpage
q. IOW Sponsored run
r. Write thank you letters
s. Launch website
3. PHASE III – Raise National awareness formalise BeNICE as a charity and challenge the concept of NICE
a. Launch National campaign

MOST MILESTONES WILL NEED A DETAILED PLAN OF ITS OWN. ONCE I KNOW EXACTLY WHO IS DOING WHAT I SHALL ENGAGE WITH INDIVIDUAL TO CREATE PLAN.

Raffle Prizes Letters

Just so you are all aware, Carla and Tel have the letters ready to send tomorrow to the following companies to see if they can donate prizes for the raffle.
Argos - Portsmouth, Gosport, Fareham, Havant, Waterlooville, Titchfield, Southampton x2, ChichesterDebenhams - Portsmouth, Southsea & SouthamptonKnight & Lee - Southsea & Southampton

Threshers - Paulsgrove, Northend, Fareham, Portsmouth

x2JD Sport - Portsmouth, Bognor Regis, Fareham, Chichester

JJB Sports - Fareham, Waterlooville, SouthamptonB&Q - Southsea, Havant, Fareham, Hedge End, Swaythling, Eastleigh, Nursling (soton), Bognor Regis, Basingstoke, Christchurch, Worthing, Bournemouth, Salisbury, Farnborough, Shoreham-By-Sea, Guildford, Poole, Newbury, Brighton.

Welcome to Jane

Just a quick note to say "Jane you are most welcomed to our fund raising group"

Generic Fund Raising Letter

Your Address Here

Tel or Email here

14 March 2008

Dear Sirs
Diane Winston is a Kidney Cancer sufferer who desperately need a potential life saving drugs called Sorafenib which are being withheld from me by Hampshire Primary Care Trust ( PCT ).
Her support group is working on raising awareness of this situation which just about anyone of us could so easily find themselves in along with around 3000 people nationally who are already there. Would you be so kind as to let me know if your company would be so kind as to donate whatever it can to add to the attraction of prizes to be raffled in support of this.
In support of this work Vauxhall have already donated a car at cost which will be used in support of raising awareness while obtaining funds by raffling the car to purchase the life saving drug which are being withheld from me by Hampshire Primary Care Trust ( PCT ).
Meridian television is also on side and will be giving coverage to this event.
The following is a summary of her medical situation and can be confirmed with a doctor’s letter if required
In October 2006 she was diagnosed with Kidney cancer in my right kidney.

The primary tumor was removed on 6th November 2006, when an emergency operation was necessary in the evening to stop internal bleeding.
This was followed by a 3-month course of Interferon, which was terminated three weeks early because of my inability to tolerate the side-effects. The most recent MRI and CT scans have shown that the cancer has spread significantly and there are new sites, which clearly indicates the reduced treatment has failed..

Had her cancer been diagnosed earlier there is every possibility that it could have been caught at Stage I and not Stage IV, permitting a better prognosis and chance of survival.
As a member of NHS staff, she is aware of the complex financial decisions that need to be made when introducing new medication as a standard treatment. However, she is also aware that Sorafenib has been shown in a clinical trial to increase survival (with a statistically significant difference compared with placebos), and that this would give her a chance to delay or halt the disease within my body and permit greater freedom of movement. In fact, Sorafenib is prescribed to patients suffering from advanced kidney cancer in the U.S.A. and in Europe. Its use in the U.K. is being considered by NICE, which will report on it in 2009, but that might be too late for me.

So far her husband Lionel Winston has secured assured coverage of Vauxhall involvement with Meridian Television and is working on placing the car on site at the HMS Sultan Summer show and the Meet the Navy Weekend in July of this car. These venues would secure maximum publicity for all involved by doing so would raise awareness of this situation.


Thank you.


Yours truly,

Your Name

Call to Fund Raising

Dear All

I feel that the time has come to start some serious fund raising. Having secured a First prize we need to start the ball rolling for smaller prizes.

I was thinking of 2 other large prizes and 7 other smaller ones making a total of 10 prizes.

Tomorrow I shall write a generic letter asking companies to donate gifts which we will then raffle off and nominate the people to deal with the designated areas or indeed people could volunteer. Once you have your area it will be up to you to either write or visit the companies which you think would help. I know this will take precious time and that is why I think we should split the work. I also think we should start deciding what prizes we want as I will ensure that the funds are made available to buy anything which we need but haven't been gifted.

So please let me know soonest if you would like to cover an area.

We also need to think of a name for this venture and a caption which captures the essense of the aim (ideas please).

Tomorrow I hope to talk to the Captain of HMS Sultan so I will be able to report what support we can expect from there.

Di has had an idea for a stall at the Sultan Summer show of guessing the value of the coins in our bottle. I think it is a good one and will discuss this with Sultan.

News about the Car

Another bit of good news, Vauxhall has offered to supply us with a car at a cost of approx £6500 which is really good news.
Payment to be after the raffle so we do not have to find any funds up front. I have a few irons in the fire for venues to promote this but can say now that HMS Sultan's summer show will be one of them. I will be requiring ticket totes for the 2 days (dates to follow).

Meridian News Clip

Ang, Di

That is fantastic news regarding the drug. Just let us know what we can do in addition to support.
Both Debra, myself and the girls saw the interview on Meridian today, I think it went well. I thought it was balanced and managed to convey the message..
(although a little short in length 2 mins ish).

For those of you who missed the interview please see the attached link..

http://www.itvlocal.com/meridian/news/?player=MER_News_15&void=163268

Take Care
Deb, Lee and the girls

Good News

Good News Guys we ordered the drugs this afternoon and Di should have them within a week.

The TV interview went out today and Meridian has said that they we do follow ups on this so I suppose it is is now up to us to build on it.

Vauxhall phoned me today but we were out however they said that they had a proposal to put to us (fingers crossed).

I shall now be concentrating on raising funds.

Outline Plans and Blog News

Firstly a bit of good news. Di and myself were interviewed this morning by ITV. It went really well and will be viewded tomorrow evening at 6 pm. Please let all your friends know and ask them to follow up with a call to the ITV offering support in anyway they can. I am not asking them to do anything we just want the ITV to know that they have a story of interest. In addition they have said that this is not a one off but will give coverage to the fund raising campaign. As an aside would you all be so kind as to address Ann Keen as Mrs Ann Keen in your letter this evening.

Please find attached an outline plan of things to do. Please note that this is not a plan as such as there are clearly items which will need a plan of thier own. The list is not exhaustive and if anyone can think of something please let me know seperately and I shall add to it as we only really want 1 author.

Thanks to Leroy and Sonny for thier assistance on finding the Blog. I finally went for the one I did as it uses Google and I am resonable confident that we all have access to Google.

If you have recieved my invite to join my Blog please follow the relevant instruction as the sooner we are all on it the sooner I can stop sending emails. However if there is even just 1 of you who cannot view the Blog I shall continue to send that person the emails.

1. Monday 10 March TV interview at home (Di and Me)
2. Monday 10 March talk to Vauxhall to discuss obtaining car (Di and Me)
3. Monday 10 March sent email to Ann Keen (All)
4. Tuesday 11 March instigate process to obtain sorafenib (Di and Me)
5. Continue gathering info on sourcing drug (Mac, Regina....)
6. Start calculating number of tickets we must sell (Di and Me)
7. Start obtaining permission to site car and sell tickets at various venues (Sultan, Collingwood, Naval Base etc....) (Di and Me)
8. Start obtaining permission to sell tickets in various Naval Messes
9. Design and order tickets (Carla)
10. Look into venue for charity Dinner (Di and Me)
11. Write to local companies for charitable donations(looking to split this one by area eg Fareham, Gosport, Portsmouth, etc looking for volunteers to cover specific areas)
12. Engage accountant
13. Create fund raising website (will need major help with this one)

Testing

This is a trial Blog