NEWS
July 2010
Early Day Motion
Please request that your Member of Parlament signs this Early Day Motion.
http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=41247&SESSION=905
SUPPORT FOR ANKYLOSING SPONDYLITIS PATIENTS
23.06.2010
George, Andrew
That this House supports the National Ankylosing Spondylitis Society (NASS) in its work for people with ankylosing spondylitis (AS), a form of inflammatory arthritis which affects around 200,000 people in the UK with symptoms usually starting in early adulthood; notes the NASS drive to raise awareness of this condition, which can have a major impact on quality of life and ability to work; is concerned that many people with AS in the UK do not receive optimum care because of delayed diagnosis and lack of access to appropriate expertise and therapies; welcomes the recent NASS report Looking Ahead, which highlights the barriers to people with AS receiving the best care; and calls on the Government to ensure access to the specialists and treatments necessary to achieve the best possible outcomes for people with AS.
To find out who your MP is and how to contact them follow this link
http://findyourmp.parliament.uk/
May 2010
Texas Hold Em Poker Night - Essex Place Social Club - Brighton (Update)
Thanks to everyone who came along to support us and your generosity in helping us to raise £150.
We would also like to thank Dora Bryan OBE for her Donation towards the printing of posters and tickets for our fund raising events Dora always shows her support to us.
Daniel Lawton, Gillian Eames
After a few quiet months we have two news items.
Texas Hold Em Poker Night - Essex Place Social Club - Brighton
Please come along on the 22nd May to play a few hands and help raise funds that help those with AS.
Huntingdon Self Help Group Closure
Just to let you all know the Huntingdon Branch of NASS will be nomore after the 28th of June 2010.
It was felt by the remaing member that it was not worth going on without the support of a Physiotherapist every week. and our numbers had fallen to eight or below.
To all the people who have supported over the years a big a Thank you.
Tony Deaves
November 2009
After the success of October's petition signing another signing was organised on Wednesday 4th November by Adam at WDA, and attended by Gillian. Phil, Sam, Laura and Rosie the Guide Dog.
Adam says... "What a great day Wednesday turned out to be...sunshine and no rain but bitterly cold.
Thanks to Phil, Sam, Wendy, Gillian, Laura and Rosie the Guide Dog for spending all day supporting the cause and harassing passers by raising awareness of the threat to disability cash benefits and pushing people towards Local Authority Social Services for support in disability matters.
We bolstered the petition by a fair few new signatories and we all managed to get into the Central Lobby to speak with various people. Gillian was a trooper in coralling any MP who happened to be passing - you really are a star Gillian. We all had the chance to speak to various MPs and Laura caught the eye of a very tall Policemen who looked after her and Rosie.
We were able to speak directly with: Kerry McCarthy MP - Dough Naysmith MP - Tony Lloyd MP -Andrew George MP -John Mann MP -Jim Dobbin MP -Vince Cable MP
We were also able to lobby researchers for MPs who were unable to see us personally."
In addition following the successful Lobby of Parliament on Wednesday, Andrew George MP has agreed to draft a, Early Day Motion to bring our concerns to the House and so that all MPs can be made fully aware of the strength of fear of losing disability cash benefits for all claimants.
October 2009
Public Petition Signing on College Green
Alongside other campaign groups Gillian Eames invited passers by to sign the petition at College Green opposite the Houses of Westminster on the 8th October. For further information regarding petition campaigns please click.
If you have not already signed please put your name down.
http://petitions.number10.gov.uk/AttendanceA/
Photography by Wendy Augustine
May 2009
Sign Here
Please sign these two petitons, please ask your friends.
We the undersigned petition the Prime Minister to Look into why patients with Ankylosing Spondylitis are being denied funding from Primary Care Trusts in some parts of the United Kingdom to be treated at The Royal National Hospital for Rhuematic Diseases.
Submitted by Gillian Eames of Coalition of Ankylosing Spondylitis Patients – Deadline to sign up by: 07 November 2009
http://petitions.number10.gov.uk/ascourse/
The Prescription Promise Campaign brings together 18 charities calling on Gordon Brown to keep the promise he made in his speech to Labour Party Conference 2008 to abolish prescription charges for people with all long-term conditions.
http://www.prescriptionpromise.org/
May 2009
Access Denied - Update
I have just come back from the National Hospital for Rheumatic Diseases in Bath which the Brighton PCT had stopped my funding for after 15 years of being treated there as a in patient and out patient. After going to see my local M.P , standing outside the hospital campaigning and asking my G.P. to refer me back to Bath, I was put on a A.S course for the first time in 4 years. So it is possible for all A.S patients not only old like me, but newly diagnosed A.S patients to be referred to this Hospital of excellence .If you have A.S the National Hospital for Rheumatic Diseases in Bath is the place to be and your G.P can refer you there.
Daniel Lawton.
April 2009
Texas Hold em Poker Night @ Thomas Kemp - Brighton
Many thanks to all that attended, we raised £200 and awareness.
February 2009
Fund Raising Night @ Freelands Tavern - Bromley, Kent
Our thanks goes to Jonathan, staff and all the customers at the Freelands Tavern for making our two Fund Raising events a great success.We would also like to thank all from Face Book that have attended and your continued support for the last year. We are hoping to get charity status this year so we can raise the profile of Ankylosing Spondylitis and help others that live with this awful disease.
November 2008
Access Denied
The Royal National Hospital for Rheumatic Diseases in Bath known to many as the Mineral Hospital is a place of excellence for rheumatic diseases.
They are the only hospital to provide a residential course for Ankylosing Spondylitis patients to self manage their disease.
I was fortunate enough to be treated at Bath for over 20 years as an in patient and out patient. I will always be grateful for the care l received.
It was the clinician at Bath that referred me to have spinal correction surgery. The surgery was a success and my posture is greatly improved also my pain levels are manageable most days.
My local primary care trust in Brighton has withdrawn funding for Ankylosing Spondylitis patients in Brighton to be treated at Bath.
This has had a major impact on my health, physically as well as physiologically.
I am trying to get my services reinstated to this hospital of excellence that specialise in Ankylosing Spondylitis.
If anyone else is affected by this please contact CASP.
Where is Patient Choice that the government tells us we have?
Daniel Lawton
CASP Vice Chairman
July 2008
Football Fun Day
Mark Bromley Memorial Football Fun Day July 2008 The Winners was Marian Vine Playing for The Mark Bromley Memorial Fund and runners up was Goodfellas playing for Coalition Of Ankylosing Spondylitis Patients (CASP)
4 July 2008
CASP TAKES FIGHT FOR THE RIGHT TO BE TAXED TO PARLIAMENT
The Coalition of Ankylosing Spondylitis Patients (CASP) brought AS patients to the House of Commons to tell MPs what it is like to live with the disease. They highlighted the importance of early diagnosis and treatment for this debilitating condition that could enable people to stay in work or go back to work if they are able.
AS is a chronic, degenerative inflammatory arthritis that can cause pain, stiffness and inflammation at sites where certain ligaments or tendons attach to bone. Diagnosis and treatment early in a patient’s life is essential to slow down the progression of AS.
The average annual cost of treating an AS patient is £6,165[1]. If these patients were given the most effective treatments, they could be contributing (in tax) an average of £6,000[2] to the UK coffers.
“The cost of treatment against the potential tax revenues proves, that on the whole, it’s far more economically sensible for us to be treated and working than struggling and on benefit,” said CASP Chair Gillian Eames.
“AS patients want to work if they are physically able, want to contribute and want to maintain their stake in society. This lobby of Parliament was essential to raise the profile of this disease and highlight the long term value to the economy of proper treatment and support.”
“Providing effective management of the painful symptoms and associated health conditions of AS would mean that people with the disease do not have to leave work for a life of unemployment on incapacity benefit.”
People with AS from all over the UK met with MPs to speak about the disease and explained to them what they can do to help AS patients achieve a better quality of life. Highlights of the day included meetings with MPs that have AS themselves: Huw Irranca-Davies MP and Andrew George MP, who both gave their support to CASP's campaign. Conservative Leader, the Rt Hon David Cameron MP also congratulated CASP on their campaign to highlight the importance of employment issues for people with AS and posed for a photo with Gillian Eames and Jo Douglas outside the House of Commons.
Ends
Notes to Editors:
What is CASP?
The Coalition of Ankylosing Spondylitis Patients (CASP) aims to facilitate effective communication between people with AS that struggle to get the appropriate treatment, support services and financial assistance that they require with those who can provide the help they need. CASP is the only organisation in the UK founded by AS patients specifically to work on behalf of people affected by AS. The coalition will therefore also campaign nationally to highlight the challenges faced by people with the disease, with a view to bringing about better understanding and recognition of this debilitating form of arthritis.
AS is a chronic, inflammatory arthritis that can affect various parts of the body including the spine, eyes, hips, ribs and shoulders. It can be very incapacitating and in some cases lead to disability. There is currently no known cure for AS, but there are treatments and medications available to reduce symptoms and manage the pain. CASP was formed for the primary purpose of supporting and assisting people with AS who are not able to access the appropriate treatment and support services they need to manage their condition effectively.
CASP is a voluntary organisation (although not a charity) and is therefore reliant on the hard work of its Committee and donations from companies and other people affected by AS for the means of its operation.
[1] A study published in 2004 and conducted over nine years on patients at the Royal National Hospital in Bath who registered between 1992 and 1994, estimated that, the mean annual cost per patient is £6,165, of which indirect costs comprise 57.9%. The largest factor in indirect costs is early retirement caused by the condition.
[1] Based on 2007 Annual Survey of Hours and Earning (ASHE) which state that the median gross annual earnings for full-time employees in the tax year ending April 2007 was £24,000. Tax contribution was calculated for that year on listentothetaxman.com
PATIENT GROUP APPLAUDS NICE GUIDANCE
A patient organisation set up to help individuals with a type of arthritis has today (29th May) expressed relief following an announcement by the National Institute for Health and Clinical Excellence (NICE).
CASP- the Coalition of Ankylosing Spondylitis Patients are delighted that patients will now be able to access two out of the three anti-TNF therapies that were being reviewed by NICE.
"This is fantastic news for Ankylosing Spondylitis patients in England, Wales and Northern Ireland," says CASP Chair and AS patient Gillian Eames.
"This has been a really long process for patients waiting for treatment – almost four years. Just a few months ago, I had to fight my Primary Care Trust to get access to a life changing anti-TNF treatment. This guidance now means no patient should go through the trauma of fighting for these treatments again. It really gives patients like me hope of managing this painful and debilitating condition.
"We are delighted that patients already on the third treatment will be able to continue to use it. However, we are concerned that under this Guidance patients will not be able to try a second type of anti-TNF if the first is unsuccessful. We urge all PCTs to implement this Guidance as quickly as possible so that patients can start to see the benefits."
Ankylosing Spondylitis (AS) is a chronic, degenerative inflammatory arthritis that affects the vertebrae of the spine and can cause pain, stiffness and inflammation in sites where ligaments and tendons attach to bone. This can also lead to new bone formation on the spine, causing it to fuse in a fixed, immobile position.
Symptoms of AS generally start in the early 20s, with over half of patients being diagnosed at 35. The early onset and severe pain associated with the disease makes access to the most effective treatments essential.
The newly formed Coalition of Ankylosing Spondylitis Patients (CASP) is a not for profit organisation focussed on providing a lifeline to people with AS. It will also campaign on behalf of patients whose chronic pain could be reduced if they were able to access the best diagnosis, treatment and support available.
Notes to Editors
The Coalition of Ankylosing Spondylitis Patients (CASP) aims to facilitate effective communication between people with AS that struggle to get the appropriate treatment, support services and financial assistance that they require with those who can provide the help they need. CASP is the only organisation in the UK founded by AS patients specifically to work on behalf of people affected by AS. The coalition will therefore also campaign nationally to highlight the challenges faced by people with the disease, with a view to bringing about better understanding and recognition of this debilitating form of arthritis.
AS is a chronic, inflammatory arthritis that can affect various parts of the body including the spine, eyes, hips, ribs and shoulders. It can be very incapacitating, and in some cases, lead to disability. There is currently no known cure for AS, but there are treatments and medications available to reduce symptoms and manage the pain. CASP was formed for the primary purpose of supporting and assisting people with AS who are not able to access the appropriate treatment and support services they need to manage their condition effectively.
CASP is a voluntary organisation (although not a charity) and is therefore reliant on the hard work of its Committee and donations from companies and other people affected by AS for the means of its operation. First and foremost, CASP is raising funds to build a basic campaigning website. This will be the main point of contact for people seeking assistance from CASP. Asking to be taxed may seem a little strange, but Ankylosing Spondylitis (AS) patients from all over the UK travelled to Westminster on Wednesday 2nd July to say to their MPs ‘Treat me so you can TAX ME!’
