Action4OurCare are holding a Public Meeting in St Briavels Pavilion on Saturday, 16 April 2016 from 10.00 to 12 noon. The reason that we are holding the meeting is that the Welsh Government will not allow the patient leaflets and letters to go out to the English resident patients until after the Welsh Assembly Elections , so the test phase cannot begin. We have no idea when the test phase will begin but, if the test is given the go ahead, you will get your legal entitlements in a matter of weeks.
NHS England and Glos Clinical Commissioning Group are ready to go ahead with the test but 21,000 printed leaflets are sitting in Birmingham gathering dust ready to go out and they cannot send them out until the Welsh Government agrees. We have been strung along each week (by the Welsh Government – not Glos CCG or NHS England) in the hope, I suspect, that we would not have time to organise a Public Meeting before 5th May 2016 elections so Action4OurCare is having to pull this Public Meeting together very quickly.
We now need to get this into the public domain and stop patients being deliberately kept in ignorance and denied their rights. This can only be suppressed if people are not told what is going on.
Action4OurCare is the only action group along the border –patients in Shropshire and N Cheshire have no idea whatsoever even about their legal rights and although Herefordshire has seen some activity thanks to their MP Jesse Norman and one activist who came to our last Public Meeting, most people in Herefordshire have no idea either. Gloucestershire has the biggest group of people affected with 8,796 patients affected out of 20,804 patients up the whole border (as at 29 October 2015).
The Action4OurCare Committee would be really grateful if you could support us in any one of a number of ways:
Firstly by attending in as many numbers as possible. We need to have a high attendance - last time 270 people came and we need similar numbers. If we have a Public Meeting with poor attendance, the Welsh Government will be happy to ignore us. They have referred to us as that small group in Gloucestershire and we need to show them our mettle. Please can you tell all your friends and get as many people as possible to come on the day?
Secondly, please can you advertise the Public Meeting locally in the village and surrounding area as much as possible by putting posters in your windows or on your gate etc if possible and asking your friends to so the same. I attach the poster we have written for your information. If you are able to print it off and put in your window, great. If not, we are collecting the colour posters from the printers on Good Friday (long story), so if you can email me back, I will get a printed poster to you. We want the village to be plastered in posters if possible. Action4OurCare will be putting up posters as well in the village next week and bigger roadside posters nearer the event.
Thirdly, we will be distributing 2700 leaflets via the distributor of the Forest Review newspaper inside their paper on 6 April (the earliest that they can do this) to local areas from Sedbury up to St Briavels and local Parish Councils have offered to help too. In addition, we plan to leaflet St Briavels and the immediate surrounding area manually, so if you can deliver some leaflets next week (again we are picking them up on Good Friday) even if it is just a couple of streets, can you let me know what you can do and when and I will get printed leaflets to you. It is important that we know which streets will be leafleted so that we can fill the gaps and we don’t have enough leaflets to leaflet twice by mistake. I attach a copy of the leaflet that has gone to the printers for your information.
Finally, we are short of manpower on the day of the Public Meeting as we are down to 6 committee members. We need a couple of volunteers (3-4 people) on the day to wear Action4OurCare Volunteer Badges and help us with tasks like greeting people and showing them to their seats, showing invitees to reserved seats and giving them their badges to wear, holding a bucket for donations, showing the press to their area, helping disabled people get to their reserved seats, helping set up the chairs, helping Ruth Harvey and Judith White serve the tea/ coffee etc . The volunteers would need to be at the Pavilion from 9.00 am and then attend the meeting from 10.00 am. The Public Meeting worked well last time because it was well organised and we are going to follow the same format.
If you can do some or any of these things, please can you let me know what you would be able/like to do? If you can’t come or do anything, that’s fine too – quite understand.
FINALLY, there is a television documentary that has been made by BBC Wales about Annie Mulholland who is a very brave and lovely lady who lives in Cardiff and knows that she has terminal Ovarian Cancer. The programme is being aired on WEDNESDAY, 23 March at 10.40 pm on BBC Wales and if you can watch it or record it and watch it, if ever there was a good reason to sort out our cross border healthcare arrangements , Annie’s story will tell you why.
I met her at her home in Cardiff one morning in early January to exchange information about Action4OurCare and learn about her campaign and then I and Mike Lenthall (committee member) went to her event in Cardiff last month – which was about cancer care in Wales and was quite shocking. She has sent Action4OurCare this email below:
I thought you’d like to know that there has been a flurry of activity to promote patient engagement following the Cancer Patients’ VOICES Event in Cardiff Bay on 2 February. I shall be posting updates quite soon on the next steps forward.
I thought you would like to know that BBC Wales will be airing a 45 minute documentary - THE BORDER OF LIFE AND DEATH on Wednesday 23 March at 10:40 p.m.. It will follow the campaign in Wales of Annie Mulholland following her move to England to access a better range of cancer treatments and clinical trials. The Cancer VOICES event on 2 February features in the documentary. I’m delighted a number of you are in the film and more importantly your views and voices will be heard.
Please visit the One Voice for Wales Campaign Facebook Page and SHARE my post, and follow and RETWEET or FAVOURITE Twitter Feeds promoting the documentary. My Twitter account is: AnnieMulholand