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.