Would it happen here in France?

[Val_2]

I can't name names but I am sickened at this. Our elderly english friends who have lived here over 15 years have a son in law back in the UK who,after four years of being fobbed off by doctors in the UK has finally been diagnosed with Motor Neurone disease for which there is no cure for and life expectancy is usually only five years or less. Its been an uphill struggle to get any sort of help for his family as he is only mid-30's and has four kids under 20. Now the UK DSS have told him that he must work or lose his miserly benefit. This poor lad is completely wheelchair bound, losing the use of one arm already as well as his legs and has trouble now breathing and he has had to be wheeled to the local job centre by his wife to attend an interview for work. This week he started a job - 48 hour week doing work with his hands, if he cannot keep it up,his benefit will be stopped and at the end of the day he is absolutely no better off because he has to take a taxi at a cost of £30 for a week just ten mins down the road from his house. I think this is absolutely the most disgusting thing I have heard now about the state of the UK and makes me wonder if those coming from eastern europe and the like also have to play by the same rules.

[SaligoBay]

Val, that is truly dreadful.  Having watched someone from their first diagnosis right through to their last minutes on this earth, I would not wish this horrible horrible disease on anyone anywhere.

I don't know what to say, it was in the UK, he was diagnosed very quickly after first complaining of a "floppy foot".   His employers (BT) were extremely good, he had an excellent doctor, nurses came to the house for palliative care.  Somehow, without going private, he got the treatment you'd expect in France!

But your case is just awful.  And no, it probably wouldn't happen in France, as long as he knew all his rights and was prepared to fight for them.  If that's any consolation to him.

I am saddened to hear about this.   

Here's the MNDA link http://www.mndassociation.org/full-site/home.shtml

[Hagar]

Val,

It sounds like your friends' son-in law has been wrongly advised by the staff at the DWP (name changed from DSS some years ago).

Somebody that has been diagnosed with Motor Neurone Disease should most certainly qualify for Disability Living Allowance (DLA). DLA is by and large over and above other benefits and does make it easier to qualfy for additional assistance. Details can be found at http://www.dwp.gov.uk/lifeevent/benefits/disability_liv_allowance.asp#howmuch.

If he feels he has been wrongly advised then he should make a formal complaint - details on the web site. It also helps if he can get support from his local MP. Queries by an MP are treated with high priority in the DWP.

There are a whole range of benefits and assistance available to people suffering from MND. Some provided by DWP others by local council. The association listed by SB is a very good place to start.

rgds

Hagar

 

[Val_2]

Thanks for the replies. Yes I too said about the wife and children taking it up with their local MP and maybe bringing it to the attention of the national press. Its just scandalous and whats even sicker is that the poor chap has to have a breath of oxygen every so often to clear his lungs and head. Apparently the local hospitals in the county are some of the worst in the UK for treatment and yes, it all started with a floppy foot which he noticed when he was driving to France on holiday, its just that no one would take responsability after lots and lot of different tests to say it was MND. I think they realise there are many helpful other families and victims out there but there never seems any time with the wife holding down three part time jobs to make ends meet and the kids worse than useless at helping at home and preferring to spend,spend and spend. Actually I think they caused quite a stir at the local job centre when they entered with a wheelchair and the staff were so oblivious too,just like automatons in their jobs with no feelings.

[Russethouse]

I'm sure Hagar is speaking from a position of knowledge but just as a lay person reading this I feel that they have somehow 'slipped through the net'. This isn't the way the *system* is supposed to work at all and I am surprised that their doctor hasn't been more proactive on their behalf or at least pointed them in the right direction.

I hope they find some help very soon