Please follow this link to read this report Predicting the future for ALS
Neater Eater enables anyone who can chew and swallow the dignity to be able to feed themselves, should they lose the use of their hands.
For full details of this equipment please follow this link http://www.neater.co.uk/neater-eater-2-2/
Please follow the link below to download a PDF issued by Healthwatch Kent, following a meeting on July 3rd. We had members attending on behalf of MNDA East Kent.
The article below was published in The Huffington Post – and is best seen by following this link https://www.huffingtonpost.co.uk/entry/since-my-husbands-diagnosis-with-kennedys-disease-our-income-has-plummeted-prescription-charges-only-add-to-this_uk_5b1142f3e4b0d5e89e1ef965?guccounter=1
This Sunday marks the 50th anniversary of the prescription charges exemption list. This list has remained largely unchanged since 1968, which campaigners say has resulted in people living with long-term conditions paying high amounts for necessary medication. This week we hear from campaigners and people, in their words, on these costs on why they believe these charges should be scrapped.
Unless you’ve seen your income erode to nothing, you probably wouldn’t get aerated about prescription charges. You might notice when you pop into your doctor’s surgery for a prescription, that the cost has gone up per item (currently £8.80 in England if you are interested). You might think about why some conditions get free prescriptions and others don’t but you probably don’t send much of your time worrying about it.
As my husband and I have recently found out, we are all one illness, condition or accident away from discovering all about prescriptions charge exemptions and the inequity present in the current list.
The list of medical conditions which are exempt from paying for prescriptions hasn’t changed since 10 June 1968. Cancer was subsequently added to the list in 2009 but that was the last change. Why is this a problem? I’m going to use my husband Mark’s long-term illness as an example. The first paper published on Mark’s condition was published in July 1968. This was a whole month after the list of prescription exemptions was drawn up. The list hasn’t kept up to date with medical progress or treatments.
Kennedy’s Disease is a rare disease of the motor neurones. Mark was once fit and active, with a professional career and interested in cycling, swimming and running. He started to limp and we all thought he needed some rest and a bit of physiotherapy. The limp became worse and he started to fall over. He went from using a stick, to crutches and now has a wheelchair to help him move around. His muscles are simply wasting away and his breathing muscles need to be supported by a machine at night.
Kennedy’s Disease is progressive and degenerative so things get worse over time. There is no treatment and no cure. So, no drugs. However, Mark does get frequent chest and throat infections, sometimes needing steroids and antibiotics.
Mark was ill health retired four years ago and I no longer teach. I am now his full-time carer. Our income has fallen off a cliff. We used our savings to adapt our house. We created a downstairs room and a wet room as he could no longer climb stairs. Having a long-term condition means additional expenses. We travel further for medical appointments to see consultants in specialist clinics. Heating and water bills are higher and costs are rising.
In addition to specific illnesses, there is one other category that enables a medical exemption from prescription charges. Anyone with a continuing physical disability which prevents them from going out alone, is exempt. In other words, someone in a wheelchair, or who is unable to go out without a carer, is eligible for free prescriptions.
We didn’t find out about this from any of the clinicians who had diagnosed or continued to support my husband, nor did we find out during his NHS wheelchair assessment. We found out from a member of staff at the Motor Neurone Disease Association (MND Association) * during an unrelated conversation two years ago.
Once we were told this we filled in a simple form, the GP signed it and sent it for processing. The onus is on the person living with the condition to find out whether they are exempt and to complete the form. We do feel that signposting is needed to highlight that this exemption is available. Anecdotally we are aware of people who are eligible for free prescriptions via this category but do not know about it.
And the real kicker – Mark has recently been diagnosed with diabetes as a consequence of his Kennedy’s Disease. His body effectively destroying the delicate insulin producing cells he needs. Diabetes is a condition exempt from prescription charges. He now qualifies for free prescriptions on two fronts. But me, as an asthmatic, and his carer, earning just £64.40 a week in Carer’s Allowance does not. A prescription charge of £8.80 for me is pretty much a whole day’s pay (£9.20). Now that’s a sobering thought.
*The Motor Neurone Disease Association (MND Association) support people with Kennedy’s Disease.
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The WaitLess?App for East Kent, shows the combined length of wait and journey times from where you are to A and E departments and?Minor Injury units in East Kent.
This useful App may not get you seen any sooner, but at least you will know how long it will take.
It’s free and available for Apple and Android phones, please follow this link for more details
Did you know the MND Association also supports people who have Kennedy?s disease?
In May a?new clinic specialising in Kennedy?s disease opened in?London at the National Hospital for Neurology and Neurosurgery.
To find out more please follow this link.
The Automotive Group was established over thirty eight years ago and since its inception have been involved with the design and adaptation of Wheelchair Accessible Vehicles. After extensive research, development and consultation our latest range of ultra-modern Wheelchair Accessible Vehicles makes transportation for wheelchair users a pleasure.
We also pride ourselves for the technology and comfort built into our design; so much so that we have included T and C within our company logo which depicts a Segedunum Domus the Latin word meaning ?Strong Fort?. The Romans used it many years ago as a name for their fort, the remains of which are still situated adjacent to our premises on the banks of the river Tyne Newcastle upon Tyne. As in Roman days we believe in the strength of technology, design and comfort being built into our product for the benefit and enjoyment of our customers.
Taken from the Automotive Group website at http://automotivegroup.co.uk/
MNDA East Kent post this item as a link for anyone interested in Wheelchair Accessible Vehicles.
The following is a list of known support groups in our area.
Carers Support – Canterbury, Dover, Thanet, 80 Middle Street, Deal, CT14 6HL????????????????????? Tel 01304 364637????www.carers-supportcdt.org.uk
Carers support (covering Ashford, Folkestone, lydd, Faversham, Sittingbourne and Sheerness) Norman House Beaver Business Park Beaver Road Ashford TN23 7SH???????????????? Tel 01233 664393????www.carers-ashford.org.uk
Maidstone and Making Carers project VAM 39-48 Marshall St Maidstone ME14 1HH???????????? Tel 01622 685276 www.vam-online.org.uk
The Kent Carers’ Emergency Card.??This card?is used in the event a carer has an accident or becomes unwell suddenly, it identifies that they care for someone. The website for the card is – www.kentcarersemergencycard.org.uk
Campaign’s Contacts work spreading information about?MND to persons in authority who can make a difference in?the way services are available to persons with MND.? While their work may be directed at persons like MPs, Local Government, Doctors Social Care providers, the information spreads out the general public.? This?brief?5 mins film gives a flavour of the work they do and why they do it.
The second video we are asking you to look at,?came out last night(11th Nov. 2015). It is just one?minute long and highlights why?everyone?should sign The MND Charter.
Many people looking at this page may wish to contact their MP.? The following video shows how to do this.