Fair deals for the long-term sick

This ls long but I make no apologies, it covers a vital subject and we need you to read it, please. As you all know I am classified as an invalid for various reasons. You also know that I am extremely fortunate to be in France and under the care of our brilliant Health Service


I was very shocked therefore to find that my good friend Roland Clarke, who is in a similar position in the UK, is experiencing some appalling treatment at the hands of BT.


Tell us about the story, Roland.

Awww - Roland and Juanita.
Roland and Juanita.


At the beginning of January we knew that we were moving house at the end of February, so we contacted BT [British Telecom – who provided our phone & internet] – to arrange the new service. On January 9th BT gave us an engineer appointment for February 17th, and for the next six weeks we received letters, emails and texts confirming the appointment and ensuring someone would be at home. But on February 17th the engineer failed to turn up. Next day we rang BT and their representative said the order had been wrongly entered as a new account, so a new date was fixed for April 10th.


However, BT took total responsibility for the error, and the rep said they would fast track the order so that we had the connection by the time we moved on February 27th. But that never happened, with the blame placed on BT Open Reach – the engineering department – who were supposedly still recovering from the winter storms. Then they claimed that as the home was brand new that the cables needed to be laid to the mains, even though it was on an established park with neighbours already connected, plus a BT junction box outside the home already. So despite the promised fast track, our new appointment remained as April 10th.


In the run-up to the appointment we received confirmation details, including instructions on being there, by letter, email, text and phone call. I even told the BT rep, who called to confirm, that the engineer better turn up this time or we would have to take action. Of course, the engineer failed to turn up and nobody rang to explain the non-appearance. When we rang we were told that the house needed to be connected to the exchange, although they were unclear where this work had to be done – but it would be done that day. Next day we were told that there was more work to be done at the exchange, but they had a resources problem that was affecting their ability to lay cabling. What cables? Why hasn’t the lack of cables caused our neighbours to lose their service?


Anyway, BT Open Reach now says the work will be done by April 17th at the exchange and we’ll be connected by the end of the week. We’ve given them an ultimatum that if the service is not connected by the end of the week, then we will be taking action.


And during all this prevarication and evasion time, BT has taken money for a bill charging us for non-existent services between March and April.


So let me get this straight? You paid them, they have your money and they won’t give you the service you’ve paid for. Is this usual?


It’s not meant to be usual or contractual, but they have taken the money from others in similar circumstances, and been reluctant to refund it. We’ve cancelled our direct debit so they can’t take more. We’re under contract on part of our service but BT has failed to deliver anything , so they are in breach in my mind. In theory BT cannot bill us for anything until they have connected our phone and internet. But we will see.



What benefits (apart from financial, I’m not that nosy) do you get due to your disability?


The benefit of being called a scrounger. I don’t pay for vehicle tax, although we have changed to a wheelchair accessible Kia Sedona, so have to get that registered under the disabled class before we can be refunded for road tax we’ve paid.


What about prescriptions? All my medication, dental work, glasses etc are subsidised because of my status (and very limited income on an invalidity pension).


Unlike health care in the USA and other countries, NHS services are free but I have to wait my turn, and for some services there is a long waiting list. It is also a postcode lottery with services better in some areas than others. Not all Health Trusts prescribe key MS drugs – for instance West Kent Trust wouldn’t Sativex, the cannabis spray that can help MS patients.


However, my West Kent NHS neurologist contacted the North Wales NHS promptly, so I have an appointment with one of their specialists on April 29th. For all the restrictions and cuts being forced on the NHS by the Coalition government, they have been reasonable if slow at times. They supply a wheelchair, and my medication is free – regardless of my age. However, because I am on Disability Living Allowance (DLA), I cannot use the ambulance service to the hospitals, except in an emergency.


The biggest concern, at the moment, is the threat of an imminent re-assessment for my DLA by the government. Many of the assessments have ignored long-term conditions like MS, and pronounced beneficiaries fit to work, so they lose their benefit. This has happened to terminally ill patients, in some cases just before they died. An army veteran, who lost his legs in Afghanistan, was refused benefit on the basis that they might grow back. True or apocryphal doesn’t matter, there are other cases and the re-assessments are extremely unpopular. If a wheelchair user can’t get to an appointment because the assessment centre is upstairs, why penalise the user? Because we are all scroungers.


I suppose you have a Disabled Parking disc? If you do you’ve got me beat because I don’t qualify for one but I do have a card saying I must be offered a chair if I have to wait longer than 10 minutes in a shop – I do love that one. I can also go through the “pregnant ladies” queue in the supermarket but at my age I tend not to.


Haven’t tried the pregnant queue and in supermarkets people frown at my wheelchair as if I’m getting in the way of their wild dash around the store. I have a Disabled Parking disc but have to renew it every two years – unlike the USA where a disc is for life… as is MS.


Sum it up for us, Roland. What improvements would you like to see in the NHS and general treatment of the long-term sick in the UK?


I want the Coalition Government to stop treating the disabled and long-term sick as scroungers and to stop demanding that we be re-assessed or discriminated against. They behave as though they want to remove us from the system, and we wish we would shut up or die. Why are we the drain on the economy, not the MPs and bankers? Many of us have worked all our lives, paid taxes and abided by the law. Some have even fought for their country and been affected in unimaginable ways. We’ve paid our dues and we are paying every day in how we have to live. We fight to live despite our disability, but why should we fight for our rights as well?


Can I also say, “I will not be pushed, filed, stamped, indexed, briefed, debriefed, or numbered! My life is my own.”


Thanks very much for all your concern Ailsa. I will keep you and your readers informed of what happens with BT.




16 thoughts on “Fair deals for the long-term sick

  1. If it’s any consolation, we’re with bt because we got that kind of treatment from Talk Talk. Assurances, guarantees and then a month without Internet or phone.

    The disabled badges thing is a complete shambles with people like my parents being told to wait for social services to contact them and then finding they aren’t invited to be assessed until it’s too late to get an assessment before their badge expires. It’s a bit of a shower, to be frank.

    The NHS is a bit cumbersome and slow but still better than the totally barbaric system they heve in the US where the hypochratic oath is a mere technicality and you can be, literally too poor to live.



    1. Been looking at other companies – eliminated TalkTalk very quickly – and although they all have to use Open Reach for the engineering work, another company has more clout. PlusNet has been recommended by a neighbour.

      US system was a major reason that my US wife and I didn’t move there to be near her family. But being in touch with her family is one of the major problems that BT don’t understand – she can’t ring her ill 82 year-old mother.

  2. My mother has had polio since a toddler and finds walking difficult. She is now in a wheelchair. She was never eligible for disability benefits despite going to disability interviews etc. now at 77 she uses a wheelchair and has to renew her blue badge every two years but they have no car, and she can only register 3 car reg. with them so if the three of us can’t take her somewhere she doesn’t go. My father is blind in one eye and lost most of sight in other eye and they live on his meagre state pension, no benefits, no disability discounts on utilities council tax etc. They don’t have central heating or immersion heater just a coal fire no mod cons at all…. My husbands parents however, are much healthier and have lived on benefits and have council tax paid etc yet complain about how badly done to they are, deite living very comfortably.They are the type who give people who need the benefits a bad name. It makes me spit. I can’t work due to a few health reasons since cancer and can’t claim because of my husbands wage, but I have accepted that and have friends going through the disability system much worse than me who can’t claim … Grrrr

    1. I’m so sorry to hear about your problems. I agree that the greedy few give us all a bad name and I am sick of people saying “benefit scrounger” in front of me when I’m obviously unable to go out to work. It makes me even more grateful that I’m in France where we care for our long-term sick and disabled. Thank you for commenting and I hope things improve for you and your family. xxx

      1. The real scroungers are the politicians that cheat the system while making the rest of us pay. I get really upset when I hear how widespread this injustice is. Your mother is being treated as a non-person or second class citizen, writingwitch2013. This type of abuse has to end.

  3. I would like to say ‘unbelievable!’ But sadly, in my experience it’s not unbelievable. The treatment of customers by many companies, is in my opinion, appalling! When disability/illness makes it all but impossible to get out of the house, the internet and telephone are an absolute lifeline. Its our community, way of finding out about what is/isn’t availae by way of medication, therapies and liesure. It isn’t a luxury and as for being charged, that’s disgusting. Get in touch with Ofcom and your MP. No one should be treat this way.
    As a disabled person (I have MS too) I am terrified of the re-assessment that we’ll all have to endure. Some days I am better than others and this is not a state of affairs restricted to MS. It seems this is not being taken into consideration.
    I wish you luck with getting BT sorted and trust all the stress is not affecting your MS too severly.
    Take care both of you.
    Best wishes

    1. Hope that your re-assessment is positive Dianne. I’m not sure if I knew that you too had MS. As you say some days are better than others, yet few people understand that. Afraid that problems like BT generate stress and the MS flares.

      Sending you blessings and light.

  4. Reblogged this on THE DUSKWEALD and commented:
    This is from a friend’s blog….it is really nice to have friends and people who share the same thoughts and get angry about how people are treated……Thank you Ailsa Abraham

    1. I would say it’s a pleasure, but that’s not the right phrase. I wish it weren’t necessary to have to scream about this sort of thing. I will not stand by and see my friends’ health and welfare trampled on them. I can’t do much but what I can do I will. Thank you so very much for sharing xxxx

  5. Thanks for sharing Ailsa. They never pick up on people they size or bigger… The real benefit scroungers… Let’s hope at least the BT thing gets sorted. I’ve had a few miscommunications with them but eventually came through, although my thing was at most an inconvenience (and it still took several weeks to sort out).

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