Latest News
National Advisory Council Annual Congress 2011 Video
Video coverage of the National Advisory Council Annual Congress 2011 is now online.
Click here to see the video (requires beneficiary login).
Memorial Service for Lord Ashley 2nd July 2012
Following the death of their Father on April 20th, The Ashley Family have set up a memorial website www.lordjackashley.co.uk to celebrate his life and work as a lasting testament to him and which you may be interested to see.
This shows a number of tributes and links to many of the recent media items which you may also enjoy seeing and they would be very pleased if you wish to leave a short thought or tribute of your own.
There will be a Memorial Service for him on Monday 2nd July at 12 Noon at the Assembly Rooms, Church House in Central London(Deans Yard, SW1P 3NZ) and if you would like to attend, they would be grateful if you could kindly contact them through the email address on the website jackashleymemorial@gmail.com or the above address by the end of May so that a space can be reserved. It would also be helpful if you could let them know if you will need space for a wheelchair.
Patients Know Best Update
The Trust has been working with Patients Know Best (PKB) to pioneer a new system that is designed to make it easier to share medical information with medical professionals in a secure environment.
For a long time we have been aware of the need to inform medical professionals of the medical requirements of each beneficiary so that decisions about treatment can be made in the light of unique individual needs.
PKB will allow beneficiaries to point medical professionals to medical information including x-rays, or other imaging, along with other important notes such as a medical diary which will help experts to make informed decisions about treatment.
The patient is in full control of who is allowed to see the records and when. The system allows beneficiaries to discuss their needs with their GP and with other medical professionals. It also allows patients to introduce medical professionals to each other to discuss and collaborate on treatment while keeping the patient informed.
We’re working to get the system ready for use early in the New Year and over the coming months we’ll be asking more beneficiaries to help us test it. We’ll keep you updated on our progress over the coming weeks on the VTAG pages at the Trust website.
If you have any questions about PKB or would like to be a pioneering beneficiary in the testing, then please contact Linda Patching at the Trust.
VTAG Videos
Five new videos showing demonstrations of wheelchair entry systems for vehicles have been uploaded to the VTAG page within the beneficiary area.
Click here to view the videos (requires beneficiary login).
National Advisory Council Health – Grant Update
An update on the DoH visits by members of the NAC and the Trust has been posted to the National Advisory Council documents page.
Click here to open the NAC documents page (requires beneficiary login).
British Foreign Office support for Billy Burton’ release
Click here to see letter from Foreign and Commonwealth office received by the Trust concerning the detention of Billy Burton.
Thalidomide At 50 – FT.com
By Andrew Jack
Published: September 22 2007 03:00 | Last updated: September 22 2007 03:00
Thalidomide, the best-selling sedative that triggered the world’s most notorious medicine disaster, was launched 50 years ago next week, but its legacy lives on today. It is time to do more for those who were affected.
About 10,000 children worldwide whose mothers had unwittingly taken a drug marketed for morning sickness suffered disabling birth defects. Some 40,000 more developed peripheral neuritis, causing pain and sometimes paralysis.
Thalidomide – it’s not over yet – FT.com
By Andrew Jack
Published: September 22 2007 03:00 | Last updated: September 22 2007 03:00
Lorraine Mercer describes a letter she received recently from her local job centre urging her to return to work, and throws back her head as she chuckles. “How can I work? Just look at me,” she says. Laughing and talking are almost the only things she can do unaided.
She sits in an electric wheelchair that she controls with the three functioning fingers on her left hand. The four fingers on her right hand hang limp and useless. She has no legs, just tiny feet below her hips.
Mercer was rejected by her parents after her birth in 1961, and grew up in hospitals and residential homes. “I used to cry when they visited me because they weren’t dressed in uniforms like the doctors and nurses I was used to,” she says. She was put through several painful operations including an adjustment to her shoulders, and a metal rod was put into her back to support her twisted spine.