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
Monday 24 March 2008
Friday 21 March 2008
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.
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.
Wednesday 19 March 2008
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.
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.
Sunday 16 March 2008
Saturday 15 March 2008
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
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
Thursday 13 March 2008
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.
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.
Wednesday 12 March 2008
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).
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).
Tuesday 11 March 2008
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
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.
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.
Monday 10 March 2008
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)
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)
Sunday 9 March 2008
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