General Chat

I am so distressed by the following devastating decision and ask for your support PLEASE EMAIL your MP now!! LONDON and CARDIFF Day of Action! Linda

You may have read in the press about the scandalous final decision by NICE and those that know me are aware that my lovely husband suffers from this cruel disease. Please can I ask for your support either by attending the day of action (I will be in Cardiff) or by writing or e mailing your MP or AM expressing your concern. I have copied and pasted some of the correspondence I have received as it is put far more eloquently than I am able to. Hundreds of thousands of people with Alzheimer’s disease, their carers and professionals are backing an appeal against another penny pinching decision by the National Institute for Health and Clinical Excellence (Nice) which is destined to return the UK to the dark age of dementia care. Spearheaded by the Alzheimer’s Society, Royal College of Nursing and Age Concern, the joint appeal highlights a catalogue of failures by Nice in the way it reached its decision to deny people in the early and late stages of Alzheimer’s disease access to drug treatments. It also condemns the guidance as perverse in light of the evidence. The groups heavily criticise fundamental flaws in the model Nice used to decide that the differences these drugs make to people’s lives are not worth £2.50 a day. Neil Hunt, chief executive of the Alzheimer’s Society, says, “How can a body which prides itself on clinical excellence produce such unethical and damning guidance? We are left with no choice but to appeal this appalling and morally perverse decision. This is the beginning of our fight back on behalf of hundreds of thousands of people with Alzheimer's disease who deserve more dignity and respect.” Pauline Ford, representing the Royal College of Nursing, says, “Nurses are at the heart of the process of assessing, prescribing and delivering care to people with dementia. By denying them the chance to prescribe these drugs that we know will make a difference to our patients, Nice's decision will undermine the trust between nurses, patients and their families.” Gordon Lishman, Director General Age Concern says, “It is simply cruel that Nice is proposing people are going to have to get worse before they receive help. It is crucial that these drugs are made available to people in the early stages of dementia. They can cost as little as £2.50 a day per person and can make day-to-day life more manageable for thousands.” National Day of Action - Hands off dementia drugs Tuesday 27 June will be a national day of action to protest against the appalling NICE final decision to restrict access to drugs. We will be holding events near the House of Commons in London and Welsh Assembly in Wales. If you are able to attend the event in London, please email campaigns *alzheimers*org*uk. Please telephone us on 0207 306 1181 or 0207 306 0883 If you are interested in finding out more about the event in Wales, please email Sara.Billinghurst*alzheimers*org*uk or call 0292 048 0593 Thank you for reading this. Linda x

NOT AGAIN LINDA???? I thought we had already made them reverse their opinions? I will certainly e-mail my MP... for all the good that will do. We did all that the last time didn't we? And we all had letters back from NICE! Good luck Linda, I cannot come. It would be impossible for me, sorry. Deanna X

Linda mailing local MP here - also support Alzheimers Scotland much love to you and Vic xx

Thank you Deanna and Sheila for your replies. No they just kept delaying and delaying their final decision and there was not one Dementia trained Clinician or Nurse on the panel never mind a carer or patient! We were asked by the Alzheimer's society to send a cheque for £2.50 to our MP/AM made out to NHS Alzheimers Drug Fund with a short letter on the back about our concerns ( there is no such fund and the cheque cannot be cashed) as away of highlighting the issue. I have a lovely letter of support from my AM and a copy of his letter to the Minister for Health for Wales and he is meeting with me at Cardiff. Linda

i wish you all the best with this and if i can get to support you i will its a cruel thing and i wish you all the best, sending you hugs

Hi Linda, I'll do my bit. Love to you and Vic, and hope we can meet up again one day x Elaine ;-)

just sent email to my mp malcolm wicks.

I will email NICE and complain as my mum has dementia and my grandfather, aunt both had it when they died

It is our MP's we need to put pressure on as NICE have made their final decision. Can you imagine the uproar if this were cancer drugs they were withdrawing! Thank you for your support. Linda x

Sorry I took a bit of time there Linda.... had a visitor. Done it now, and it is off to my MP.. Deanna X

Linda, This is terrible I will email my MP. Love to you and Vic, see you soon. June xx

Linda, will do; one of my darling Nans died having suffered this cruel disease for four years. x

nudged before it topples over the edge ...

This is dreadful Linda. My Mum has got severe Alzheimers. Have sent you a pm. Love Maisie

As a family we suffered Linda, we watched my poor Grandad with 'The Long Good-Bye' for 15 years. I too will write to my MP. Donna

You have my full support Linda. Will email mine asap. ((((((((hugs))))))))) for you & hubby I know how devastating an illness this is. Joan xxxxxxxx

I'm with you on this one Linda, my dad died suffering with severe dementia 5 years ago and now my mum is in the initial stages of it. Bev x

Thank you all for your support and Maisie it will be lovely to meet up with you in Cardiff. The more we can do to make our voice heard the better. There is now a template on the Alzheimer's website to e mail your MP so it is very easy to do. I attend a forum every few months and it is heartbreaking to see the number of young people with this devastating illness and by young I mean in their 40's! Linda x

nudge