Thursday, 15 May 2014

Designing services for the disabled: why do we get it so wrong?

We have gotten it wrong: services for disabled patients. #MSBlog #MSResearch

"We always think we run a good clinical service, but when we audit our service we realise that we let MSers down on the simplest of things. When our new hospital was built and costs needed to be contained  the patients car park was scrapped. So patients and MSers who attend our hospital have no dedicated parking space when they need come to clinics or for outpatient procedures. So if you are disabled, and happen to find a street parking a long way away from  the outpatient department, you need to walk or use a wheelchair. Similarly, if you travel to the Royal London Hospital using the London Underground you will need to walk at least 400m to get to the outpatients department. I can't tell you how frustrating it is to move into a purpose-built hospital to find out that nobody considered how disabled patients access the hospital. So when we survey MSers attending our service their number one gripe is access to the hospital. It was therefore interesting to read this sounding board review article in the New England Journal of Medicine about the same issue in the US. When will we learn?"

The Royal London Hospital has no parking for disabled patients!

Lagu et al. The Axes of Access — Improving Care for Patients with Disabilities. N Engl J Med 2014; 370:1847-1851. 

Excerpts:

..... It was Friday afternoon, and I had promised my patient's family that I would discharge her. Despite trying all day to make a follow-up appointment with the appropriate subspecialist, I could not find a practice within 50 miles of her home that could accommodate a patient who used a wheelchair. After I explained the situation and apologized, the patient said to me, “You know, Doctor, it's like discrimination or something.”.......

....... So I told my doctor I need a Pap smear . . . and I need a table that lowers so I can scoot over from my chair. She said, “That's a great idea. Find a doctor who has one [a height-adjustable table] and I'll refer you.” — Patient who uses a wheelchair...... 

....... When I made my appointment, I asked for a specific room with an adjustable table and extra time to transfer. The day of the appointment came, and the patient care technician said, “you're only booked for a fifteen-minute appointment, so I don't think he can see you today.” — Patient who uses a wheelchair........

....... He started asking me questions . . . . I would get out a word or two and then he would cut me off and go on to the next question. — Patient with impaired speech...... 

8 comments:

  1. You guys were too focussed on commissioning some mediocre Scottish conceptual artist to handle feng shui duties and completely forgot what the purpose of the Royal London was: to serve and enhance.

    This is why MS research is clueless.

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  2. This is sad. Hospitals here in India can be difficult for disabled patients and I assumed things must be different in developed countries. Seems that isn't the case.

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  3. May I humbly suggest that one reason things like disabled access etc aren't considered in medical facilities is that the main people considered by the architects are the clinical staff - perceived as the main occupants of the building.

    Plus it's not just the building design that causes us problems. I've had receptionists tutting at me because my numb hands make getting the appointment letter out of my bag a slow process, nurses and neurologists telling me to follow them then walking off at a pace loads faster than I can manage. By the time I've surmounted all these obstacles and got into the consulting room I can be shaking, in pain and close to tears.

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  4. I attend Queen Square and there is also no parking there, which is a bigger disgrace as this is the National Hospital for Neurology. If a National Hospital can't set an example, how do you expect the others to behave. It is a national disgrace.

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    Replies
    1. The national hospital was built in the era of horse and carts. They have a lovely garden in front of the building for refuelling. Ithink its called grass
      :-)

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  5. It's a reflection of how society in general treats us and it is truly depressing. The only consolation is that it's better than in southern Europe, which (as regards attitudes to disability) are in the Dark Ages. Be grateful for the UK's handrails and ramps in public places!

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    1. ... and there are parts of the world, which are not in dark ages, but rather in the stone age.
      In place where I live you have to go 4 levels up the stairs to reach MS specialists office (which is ok for me, as I'm not yet disabled). And there is no lift. There is no ramps anywhere also. I just can't imagine how people who have disease much longer than I'm, get there. It's so awful.

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  6. It makes one question just how equitable and fair the UK is. The London Underground remains rubbish for disabled patrons. Numerous gyms lack disabled access. Cinemas often have no disabled ramps.

    It's shameful, actually.

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