Opinion with Christine Tongue: Promises, promises…

Mandy relies on her rollator

Christine Tongue is a member of disability campaign group Access Thanet

My friend Mandy recently had a disabled person’s nightmare. She spent two terrible days getting promises of help that didn’t materialise.

She had to go to London for a diagnosis of her rare condition. She falls over a lot, is wobbly on her feet, so uses a three wheel rollator for balance and a stick. She gets tired easily, slurs her speech and can just keel over when her concentration lapses.

She booked her rail ticket and asked for disabled help, which the train company makes a big deal about offering. For her two days of testing the hospital booked her into an “accessible” room in a big chain of hotels.

She texted me at every stage so I felt as if I’d done it all with her.

First hazard – the disabled help on the station went wrong: “Lovely chap  didn’t know I had to get in the disabled access carriage as rollator too wide for the aisle of other carriages. Fast train driver frantic about being held up in rush hour.”

Mandy ended up in a normal carriage blocking the exit with her rollator and bag.

“Ticket collector kindly rang ahead to tell the London station staff  which carriage I was going to be in as opposed to the one I was supposed to be one.”

“But an hour later I arrived and nobody was there to meet me. I got off (with help from other passengers) met nice girl halfway down the platform — very apologetic”.  She’d  been given the wrong carriage.

Arriving at the hospital Mandy was  instantly whisked  into a wheelchair —which was thoughtful —  but she was separated from her bag and rollator. Like most disabled people if you lose sight of your mobility aid you panic. It feels like your legs have been cut off.  But Mandy didn’t have time to make a fuss and had to get on with her tests.

The hospital did wonderful science on her and she did end up with a precise diagnosis and a plan going forward. But that didn’t give her time to eat or get a cuppa from 8am to 2.30pm.

“I’ve bunked off” she texted. Once she could find her rollator she escaped to her hotel for a drink and a lie down.

There she discovered that accessible means wide doors, grab rails, raised toilet but no chance of a shower as this was over the bath and like many disabled people, Mandy can’t climb into baths!

“It’s for one night. I’ve got a toasted sandwich and ice cream from room service. I can wait for a shower!”

Next day, no breakfast as the hospital wanted her at 7am, and she suddenly found she couldn’t see the specialist she needed to see. His registrar turned up instead. “I’ll wait till he comes in,” says my determined friend. Six hours in the waiting room and she’s told she can see him the next morning. The hospital books her into another hotel and sends her there in a taxi.

New hotel, new accessible room. Same problems. Expensive room service, and a shower over the bath! So, another night of strip washing and Mandy is thinking how scandalous it is that two separate well-known hotel chains— who make big claims about accessibility — don’t really understand what disabled people need.

The next day things went smoothly, but she got home shattered. Not surprising. It’s exhausting doing this stuff on your own, having to look out for yourself and make a fuss constantly about what’s not working.

But what’s much worse is hearing promises from big organisations and finding they don’t mean what they say. It’s like “greenwash” — you know, when big companies pretend to be worried about the environment when really they’re only trying to make themselves look good — except this is them pretending to be disabled friendly when really they’re just trying to improve their image.

What’s a good word for this nasty corporate game?  “Cripwash” maybe. Sounds distasteful? That’s because it is. Send me your suggestions.

40 Comments

  1. I sympathise, but couldn’t she have been given transport? My mother has mobility problems, so was recently driven to a London hospital appointment and back, at no cost to her. Not sure whether this was arranged via her GP or the hospital (others on here can probably clarify how it works).

  2. I was going to ask this – NHS Passenger Transport will take you to appointments if you are not mobile. They have taken me to about a dozen appointments in the last year. They are an outsourced service run by G4S but their drivers are great and the call centre staff friendly and efficient. Had one mess up a couple of weeks ago but otherwise service is good. Why did your friend not use the service she is entitled to?

  3. On Mr Checkfields point, you have to ring and arrange it yourself but that is better as you can specify your particular needs.

  4. Hospitals don’t make a point of telling you about hospital transport! She didn’t think she’d be entitled to it so booked her rail ticket and a taxi to the station. She will next time!

      • Surely both, the hospital and the rail company let her down. Its 2022, disabled people shouldn’t have to spend time ringing around finding out if places are accessible. Most companies dont even advertise on their websites if they are accessible, in fact they are more likely to mention they are dog friendly!!!

          • It shouldn’t be a struggle for disabled people -its public transport. 1 in 5 of the population is disabled in some way, they are the biggest minority group and should be catered for.

  5. For anyone else reading this, the number for booking ambulances is:0800-096-0211.They may check with your GP and or hospital but can’t think anyone would just use this service for the hell of it.

    • You have to book the transport for the particular hospital. Best to ask your consultant’s secretary.

    • Thanks for that Keith! I live in Ramsgate, and I saw my Consultant last week and he is arranging some diagnostic tests for me at the Kent & Canterbury, and the last time I went (some years ago) it cost me £28.00 for a taxi then 3 busses back! As I wasn’t receiving any Benefits, so wasn’t entitled for free patients transport, I was told to contact Patients transport, but they wanted £20.00 to join, so I didn’t think that was a good idea, for a one off! Just now I contacted the number you provided Keith, and they said yes, they can arrange transport if I had mobility problems, Bingo!

        • Interestingly Peter, a little while ago I was referred to an eye consultant at the the William Harvey, but I refused to go as I no longer drive, and there is no public transport to get there! My GP soon found someone at the Behthseda, in Cliftonville! But your right, why wasn’t I informed about free patient transport if I need it, so as I have mobility problems, and 3 eye diseases, thats what I will use in future, if they can get me to the K & C in time for an appointment!

      • Not money or benefits taken into account purely medical needs . But remember London hospital appointment via patient transport need 72 hour advance booking

  6. If you’re friend is on certain benefits she can get her train tickets cost reimbursed if she still has a ticket or a receipt for tickets this is still possible, I can’t remember what they were at the time but was either pip or tax credits or esa as I had journeys to London via train also I could have gone the day before and had hotel costs paid for only thing not paid for was taxi service if other transportation available, I don’t know your friends circumstances but it is worth looking into if she has paid herself.

  7. As an observation in connection with rail companies, I recently went to Brighton by train via Ashford and the Marsh Line. There were several passengers needing assistance on and off the trains and at each station, particularly between Ashford and Hastings and beyond, the platforms housed ramps. The delay was minimal and the much criticised Southern Rail ran to time.

    I assume the passengers had booked their requirements in advance but it all seemed to work well?

    We had some friends visit from Kansas a year or two back and they were very impressed with the service he received having to use a mobility scooter. He said he wouldn’t have had that level of assistance on Amtrak.

  8. The number Keith gave is for Kent and Medway patient transport. And it does work! But why are patients not told automatically what their options are? Plus each hospital seems to have its own contact number for transport. As for Mandy’s rail experience- it does work OK for many people but I’ve seen it go disastrously wrong on occasion and once for me when help just didn’t turn up. If I’d been on my own I would have finished up in London and still unable to get off the train! I’m light enough for two people to haul me down steps. Many aren’t. As for Mandy benefits and disabled help is only accessible after a diagnosis. So a complicated or rare condition that takes far too long to define, shuts people away from benefits.

    • So, basically, most of the time, for most people (able or not) stuff is available, and things are possible.
      Of course it could be better all round, it could improve, but it’s not, for most of us, for most of the time, a disaster.

  9. Not sure why my first name was in parentheses! I always post under my own name and think everyone else should. Anyway, at least a few more folk know about patient transport. I believe this requirement is laid down in the Health Service Act.

  10. There are a number of reasons why people don’t post under their real names.
    In the good old days of newspapers, letters to the editor would be published, attributed to “name and address supplied”.
    The IoTN doesn’t facilitate this, so posters do the next best thing: they use an alias.
    Some reasons might be:
    Not want current or potential employer to know views;
    Ditto family members;
    Ditto political colleagues.
    But some of the extremely unpleasant comments on here, verging on the violent, deter me from publishing my whole name.

      • As Andrew has already tried to educate you.. I will reiterate.. some of us do job where we aren’t allowed to have political views because right wing snowflakes can’t handle anyone having empathy or sympathy to others.

        I’m surprised you claim you would tell a disabled person to their face your brief experiences of seeing disabled people on trains overrides their ACTUAL experiences. Even for you I find that hard to believe. You clearly enjoy a bit of teasing here. Your initial comments on both Craig’s and Karen’s columns prove that. I’ve always assumed you enjoy the friendly villain role you play here and in real life you’d are actually a really decent bloke that helps others and actually has empathy and sympathy….. Maybe I’ve read it all wrong.

  11. Well done Christine Tongue, sharing Mandy’s trying experience. As a relatively newly disabled person, I have been disabled for nearly four years now, I feel I should speak up to echo some of the experience that Christine has shared from Mandy. Hotels providing baths not showers is one such experience that people with mobility issues can find challenging, without help I would not be able to manoeuvre in and out of a bath to take a shower. It surely isn’t rocket science for hotels to work it out and provide showers with easy access or wet rooms so that disabled people can use them ?
    As for those on here offering credit to “patient transport”, I suspect they have neither experience or knowledge of the concept. Yes for short journeys of just a few miles so called patient transport may be a help, but for longer journeys it is simply a form of publicly funded torture, principally in place to enrich the directors and shareholders of companies like group 4 with little or no consideration for the patients / victims transported. My own experience exactly a year ago, involved being transported from the excellent Royal National Orthopaedic Hospital at Stanmore, back to Margate. It was the most painful endurance exercise that I would describe as publicly funded torture, something its victims should not be subject to in a civilised country, although to be fair Britain after more than a decade of Tory misrule can hardly be described as civilised. Whilst I am sure the employees who transported me were doing their best with the equipment that the ghouls that employ them had provided, the fact was that the vehicle used was the most basic of vans with seats for victims having absolutely no suspension, resulting in every undulation of the road, being felt by the victims in the seats in the back of these torture chambers of transport. The transport of patients is something that should not be contracted out, it should be a service provided by our NHS to ensure that those transported, usually patients, often like me, people recovering from surgery, are transported in vehicles fit for the purpose, that do not leave patients suffering for days after from sores caused by riding in the cheapest most uncomfortable vehicles that can be obtained. Such treatment of patients is cruel and unnecessary. I have another operation scheduled at the end of this month, while I expect the medical expertise and care at the hospital will be excellent I will look for alternative transport to get me home afterwards.

    • My mother (who can barely walk, suffers cronic back pain, and needs lots of loo visits) recently got patient transport from Herne Bay to London and back, and had NO complaints. Perhaps you’d prefer the government to fund a private helicopter for you next time?

  12. As a disabled Person, I read Christine’s article with concern and interest.

    It of itself deserves detailed comment because it raises issues which are not only personal, but systemic in focus, which is central to what I’m going to say next.
    At the personal level, it seems to me that You appear to have an obsession with wanting to illustrate that Disabled People (not the disabled) are untypical, irresponsible and even ungrateful. Our day-to-day experience of living in a ableist world, which we undoubtedly do, varies enormously depending on our relationships with our impairment, and the aspirations that we have in our personal lives.
    Christine is talking in her article about crisis situations which always magnify the day-to-day problems that we experience in infinite proportions.
    The issues we faze are commonly caused and/or exacerbated by systems failures, either in design or execution.
    You’re deriding and belittling tone, added to your apparent lack of appreciation of the systemic nature of access or rather in accessibility, does not do you any credit.
    These are serious societal and political issues, and trying to drive wedges between disabled people in their discussion about what they need is, frankly, despicable.

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