News Update, June 2018
This brief Report will hopefully give you a good idea of the activities of this Charity over the past year and our plans for the future.
MND Drug Trial
Throughout 2017 we were preparing for and then embarked, in conjunction with the Motor Neurone Disease Association (MNDA), on a drug trial using mice in laboratory conditions, in cooperation with doctors at Sheffield University who concentrate on such trials, which are used as part of the ongoing instruction to university undergraduates whose training benefits by their involvement in such trials. The drug in question was Liraglutide which was originally approved as a drug for treatment of Type 2 diabetes.
The reason we supported this drug trial was that the same drug had already demonstrated, in similar trials, that it was helpful for persons suffering from Alzheimer's and Parkinson's Disease. It seemed logical, therefore, that these being neurologically related diseases to MND, that some success may be proven in the MND trial. We learned recently that this was not to be and the trial had not been a success. As a result, the MND Association released us from our obligation to pay for 50% of the trial's cost and with the agreement of the donors of the sum involved, that money has now been put towards the cost of a much larger European based trial of another drug which, it is hoped, will prove more effective. Time will show whether that hope may be fulfilled, and we will ensure that we keep you informed as and when we have a result.
British Standards and Building Regulations
One of the first major tasks we embarked upon shortly after our formation was to implement changes, or an addition, to the existing building regulations relating to the layout of disabled toilets so that they would be suitable for use by seriously disabled people needing at least two carers to assist them with every form of movement. The problem with disabled bathrooms and toilets is that the layout has nearly always been planned around the use of facilities where the disabled person does not need assistance from a carer or carers for every movement and is able to transfer himself/herself from the wheelchair to a WC or into a bath or into a shower cubicle. On the assumption that seriously disabled people with carers do not travel, as used to be the case, architects and builders have always followed building regulation layouts where the WC is placed in the corner of the room and all too often obstructed by a wash hand basin.
It was our intention to ensure that the recommended layouts should include a toilet or bathroom whereby the WC is placed centrally on a wall, leaving adequate space on either side for carers to assist their patient.
At the outset we did not imagine that to introduce changes to building regulations and British Standards could be so complex and the committees drawing up these changes could be so obstructive. Having explored every avenue, we finally obtained an introduction to the Minister of Housing, Communities and Local Government and he set up a meeting at the Home Office and brought in all the senior people responsible for building regulations and British Standards where we debated the changes we sought to have introduced. Lo and behold, a few months ago, we received an encouraging email from the Minister's office, quoting the British Standards BS 8300-1:2018 and BS8300-2:2018, which ended, "Finally, it is with the concerted input of committed parties, such as AID, that the standards and regulations evolve. The B559 committee at BSI has moved a mountain to update the BS8300 standards, and part of that mountain was your very own input."
We have now obtained a copy of the BS8300-2:2018 which runs to 206 pages in all, but our layout is detailed on page 125 and attached is a copy of that page as evidence and proof that there is some truth in the saying, “If at first you don't succeed, try, try and try again. And if possible, get a minister on your side"!
Sniffer dogs - We recently learned that a small organisation in Oxfordshire was training sniffer dogs to identify people with Alzheimer's Disease, and it would appear that this project was successful and they are now going through the same procedure with Parkinson's Disease.
It would seem beyond doubt now that dogs possess a super sense of smell and are being used in ever increasing numbers for a wide variety of detection tasks and it would seem highly probable, as the NHS are already cooperating with the dog trainers, that it will not be long before dogs are more widely used for diagnosing serious diseases. We have approached the organisation and asked them if they feel that it would be worthwhile to commence a trial to establish whether dogs could detect MND at its earliest stages. They seem confident that MND will have a particular smell which will be detected by dogs and medical people have shown interest and accept that if a dog could detect signs of the disease it could make life so much better for people who know they have a problem but do not know what it is. As the detection by a dog would not only be speedier, but would cut out a number of painful and tedious procedures involving considerable travel for a patient who has developed problems which need further investigation, to identify the cause. Where clinicians suspect a neuro-related problem, suitably trained dogs could hopefully be able to identify the actual disease from which the person is suffering and the process will only take minutes rather than months. If the diagnosis were indeed carried out successfully, this could save the NHS huge sums of money and the patient so much inconvenience and discomfort.
The reason we are so keen to pursue this activity is that we now know that there are so many international drug trials currently underway to find a drug which will alleviate and perhaps eventually cure or eliminate MND, and the other neuro related diseases, that it becomes all the more important that the diagnostic process, which currently takes up to two years in some cases, is speeded up. The sooner any of these diseases are diagnosed, when a cure or alleviating drug is available, many people could continue living a fairly normal life if their problem is revealed at its outset.
Assuming medicine finds that magic drug, its success thereafter will depend on early diagnosis, and our next step will be to find the means of educating the public to take note of any minute change in their behaviour such as falling over for no apparent reason, or dropping things, or some form of speech problem. Such behaviour should be reported to their doctor immediately and if we have achieved success with sniffer dogs, the message will be, "Having seen the doctor, make an appointment to see the dog". That should be possible within days rather than months and it should be possible to walk out of the dog clinic with a diagnosis, and if a drug has been discovered, demand a prescription. All that could happen in days rather than months or years and that is our current, biggest challenge.
Serious Spinal Injuries
A number of experiments have been shown on TV where people with severely damaged spines who are no longer able to walk, can be fitted with a device which in skeletal form can be strapped to the body and lower limbs and effectively enable these people to walk without the assistance of helpers.
Although these devices are in quite early stages of development, we have been talking with one American producer of what seems to be the lightest and easiest such appliance in terms of ease of fitting and complexity, and have told them that our charity is interested in providing this equipment, initially in Cumbria so that we can closely monitor the performance of the equipment and obtain feedback from the person who pilots this pioneering project in Cumbria.
Manufacturers have expressed an interest in carrying out trials of such a suit in the UK and we are endeavouring to negotiate an agreement where we may provide 'guinea pigs' for such a trial and obtain an agreement to distribute the suit in the UK. We have obtained an indication of $80,000 (which currently equates to slightly over £60,000 at current exchange rates) per suit which presumably will reduce as and when some form of volume production commences. If AID is to take this project forward, there are a huge number of people in the UK living in wheelchairs with damaged spines, and we would like to help as many people as we can. With costs initially of over £60,000, we, as a charity, will need to raise substantial funds to enable us to help many more people to walk again, and once we have proven the viability of this “Re-Walker”, we will be commencing a serious fundraising campaign for the "Re-Walker" and feel sure that when we have been able to demonstrate how life-changing this equipment will be, the British public will respond in its usual, wonderfully generous, way and help us with this life changing project.
These projects are both likely to be time consuming and expensive so we will update this news report as we progress each project and, assuming we achieve success with either or both, we will, of course be appealing for funding to help us to help those who cannot help themselves.
Anyone wishing to donate at this early stage, please contact us through this website or telephone: 01539448459
Accessible toilet with peninsular WC for assisted use with one or two carers
- This door may be in any position along the wall but the leading edge should be not less than 300mm from a return wall
- Towel Rail
- Sanitary dispenser
- Disposal bin
- Large washbasin with vertical grab rails either side and mirror over (see Figure 43)
- Two clothes hooks, one at 1050mm and the other at 1400mm above the floor
- Wheelchair turning space (1500mm x 1500mm)
- Independent tall mirror
- Alarm pull cord
- Drop-down support rails, one with a toilet paper dispenser
- Vertical grab rail
- Sanitary disposal unit
- Flat topped close-coupled cistern providing a back rest and a colostomy bag changing service for standing users
Note: The overall dimensions shown exclude such items as heat emitters and boxing in of pipework and adjustments in room size will be needed to accommodate these items.
a) Where high or low level or reduced flush cisterns are used, a rail with a padded back rest and a seperate colostomy bag changing shelf at 950mm above finished floor level should be provided