NHS clinic access

[Sunny Clouds]

I've tried a couple of times to post about this then fumed too much, then thought maybe I already had and deleted, but if I did, I can't find my post.

I've an appointment coming up in an NHS clinic, the service itself being provided by a private contractor to the NHS. I haven't been to before.  I got my appointment by telephone, with a text to confirm, then a letter.

The letter includes a form for me to fill in and maps, one for driving, one for bus plus walking.  They are not big and are very faint.  Even with a bright light and a magnifying glass, key road names near the centre are not legible.  There is a name for where to get off the bus, but no indication as to a landmark such as a school or supermarket or pub.

Looking at the appointment details, it tells you to arrive five minutes early and wait at the entrance.  The relevant bus is half-hourly and very unreliable, the more so for a shortage of drivers, therefore it would be logical to set out to catch the bus before the one wanted, and given that the path isn't clearly marked on the map, it would make sense to allow plenty of time for wrong turns.  Therefore, one could arrive well over half an hour early.

On the other hand, unlike many people, I can afford a taxi.  But given that recently I took a taxi for what should have been a 20 min journey and it took nearly 40 min, and given that we've had very high winds and snow which has led to road closures for repairs near me and therefore logically has nearer the clinic, I think it would be realistic to allow half an hour leeway.

Fortunately, unlike some people that have appointments, I have access to the internet, so I looked on Google street view to find where to wait.  The road has houses and a school and what appears to be a playground and warehouses.  I cannot find any public benches or cafés or supermarkets.  So if I allow suitable time leeway, I can find myself standing in cold, wind, rain or whatever for half an hour or more.

Meanwhile, the letter asks for lots of information to be given, including on the back of the maps, so you'd better have a good memory for routes to get back.  There are, however, no questions whatsoever about disability/access needs except insofar as inferences may be drawn from health questions.  There are no boxes to tick for things like visual impairments, hearing impairments, mobility difficulties etc.

I looked on the relevant private contractor's website.  No disability/accessibility info whatsoever.  I looked on various bits of the NHS site.  No information there either.

In theory, I could go and recce it, but since you're only allowed in the building if you've got an appointment, that's no good.

I telephoned the number on the letter.  I very obviously got through to a call centre.  The call handler, whilst seemingly doing her best to be helpful, struggled to help because there's no system for passing on such information.

So we shall see what happens when I get there.  I hope they're not assuming that anyone waiting outside will be able to hear them, or that they are safe to walk through any crowded areas.  I hope that if I get soggy whilst waiting, particularly if my bum gets wet sitting on a kerb edge whilst waiting, they won't get annoyed if that means I get the examination couch or whatever mucky.

Given that my ataxia seems to be relapsing and I've been having falls (though some into an object not hitting the ground) at the rate of about one a week over the last 2-3 months, if I'm having a bad day and have a call, I shall feel sorely tempted to embarass them by dialling 999 as I lie on the floor.  I shan't, because the ambulance service is totally overwhelmed, so I shall have to just settle for embarassing anyone that looks annoyed with me instead of either helping or, after a quick look to see I'm either ok or being helped by someone, carries on their way un-nosily.

But how on earth do people with major access problems deal with this rubbish?

[Fiz]

I had my wisdom tooth out in an NHS building currently hosting privately owned services being funded by the NHS like in your situation. I found it impossible to contact them. Call centres weren't local, the local number was an answerphone and no amount of messages led to anyone returning my calls. I couldn't find a PALS in that hospital so I emailed the PALS in the general hospital explaining my needs and problems.


They replied the following day saying that although there is no PALS service in the privately run hospital (which is unacceptable and a major downside of this privatisation) that they would contact the hospital on my behalf.


They must know either a phone number with a person the other end or an email address of someone who has a heartbeat because the following day I had a phone call from the privately run hospital and she resolved all the problems!


That was a very long convoluted way of wondering if you too could contact PALS based closest to where you are going and appealing for their help in dealing with your accessibility needs? I hope it's possible and they're helpful.

[Sunny Clouds]

I wouldn't know which PALS.  The one for the nearest big NHS secondary care trust, with various hospitals and clinics is totally unhelpful.  The hospital their service is based in is one of the most disability-unfriendly buildings I've ever been in.  Another local multi-hospital NHS trust has a strange concept that deaf = Deaf in-patient in specialist unit, and that partial deafness and deaf/HoH outpatients don't exist. 

Actually, I wonder whether writing a letter, sent first class, asking about disability access arrangements would wake them up?

I'll probably be ok, but my anxiety levels over this are through the roof.

[Sunny Clouds]

I phoned again and got a different call handler.  It was a nightmare getting through because I couldn't make out properly the pre-recorded options, then they blared out loud music.  But when I did speak to someone, they were really helpful.  I gather that if I get there early I can go in and wait in the waiting room.  I think what the letter means when it says 'wait at the entrance to the  building' is 'wait just inside the entrance to the building where there's a waiting room, don't go wandering around or try to find the relevant department or consulting room'.

I still don't know where to get off the bus, so it'll be a taxi, but at least now I can safely allow time for diversions and traffic jams without worrying about getting cold and soggy.

I also note that if instead of following the walking route marked on their map, I followed a different one, it would be possible to catch a fairly frequent bus, stop off at a recognisable landmark.  I shan't do that, but if I couldn't afford the taxi fare and I could walk, it would be a longer walk but actually probably quicker because I wouldn't be in a tizz over working out where I am.

I say that as someone whose navigational skills include doing something I've been known to get a smile on the ground for.  Going to London, getting off the coach, and using a compass and a few landmarks and easily identified roads to get to my destination.  Yes, I'm flexible enough to mix 'street map' with 'compass as if in countryside'

(Once when going to a demo once in London, I found myself on a road with lots of police cars. A group of officers turned to me, saw the compass and started to smile and I said something like "I don't think I need this now.  Do I just follow the police vehicles to the demo?" They said yes and we all laughed.)

I have also, when navigating round quite a few cities and towns, not just in the UK, used the sun plus a sense of 'district' or 'area' to navigate.  E.g.(random illustration) head for market area, turn at cathedral area, turn at night-out (pubs & bars) area, ask for directions when I see railway bridge etc.

So when I moan about a map, it's a seriously rubbish map.

In relation to this appointment, though, I'm seriously reassured by the kindness of the call handler who took a couple of moments to check stuff.

[oldtone27]

You said in an earlier post that you did not know where to get off the bus. You may know this, but in Google maps you should have a transport option which can show bus stops.


I find this useful in combination with street view when trying to get to unfamiliar places. The option will also give bus routes and times, but I usually check with the bus operators site to confirm.


sing a taxi is easier but can get expensive especially if you need to do a number of trips.

[Sunny Clouds]

Thank you.  That's really helpful.

It may sound daft, but I use the bus operator's site for timetables, but I'd never thought about them for bus stops except where the stop is somewhere I know my way from, e.g. a centre of a town (not a mega place like London) or a short-ish high street where I know the area but not that particular bus, i.e. wanting to know whether the stop is say, to take random names you typically find, High Street or Church Avenue or Station Road.

I wouldn't be so frantic if I didn't find hospital and clinic trips do my brain in anyway.  Being frank, I'm terrified.

I'd like to communicate in writing, but when I tried that with a consultant in a different hospital, starting by giving him some information I'd drafted and whittled down (I'm very, very much more succinct when I take time to edit, edit, edit) he kept asking questions to which the answers were in front of him anyway.  Also, I couldn't hear a lot of what he said, but he didn't listen to half of what I said.

In recent years, most trips I've had to secondary care have involved some sort of stressful access problem.

Sorry, I'm probably being repetitive.

I shall check out the information sources you kindly suggest, Oldtone.

[Sunny Clouds]

Gosh, I'm glad I took another look at the info, including the local bus company site.  They've changed the timetable.  Also, the map provided in the letter for bus + walk, listing 5 bus services isn't accurate.  Not all the services go along the road they indicate. 

Meanwhile, the bus frequency has been reduced to once an hour.  I estimate the bus closest timewise would either get me there with a couple of minutes to spare or, more likely 10 or even 20 min late, and that's assuming it didn't run late and that I didn't take a wrong turning on foot.

So if I took the relevant bus at the latest realistic, I could easily have 40-50 min to wait.  I can afford a taxi these days, but I couldn't always do so.  How the wotsit do people who can't afford a taxi cope with this stuff, especially as not all have internet access?

Oh, and I'm going there because of an injury to be assessed to see whether it just needs an appliance/splint, or whether it needs surgery.  I'm ok walking, albeit with discomfort, but what of those that aren't?

And what of all the missed appointments?  I bet they have quite a few.

No wonder health outcomes for poorer people and disabled people (there being a strong overlap as well) are typically worse than others and not just in terms of life expectancy.

[Fiz]

Yes and there's a huge gap between people who have a supporter who could take them and those who have no support network at all.


I always look at Google Street view so I know what the building and its entrance looks like before I go. I was stumped at an appointment at the Endocrinology unit this year which is an outbuilding in the complex of buildings at the General Hospital. The map of the complex they'd sent me which indicated hot to access the building failed to notify me of the building works which meant side streets and a car park needed to access the building were closed so I arrived there to discover that I had no idea how to find or get to the building because of all the building works. By the time I found it, I wasn't late as I had left with plenty of time to get lost, but I wasn't early and the resulting stress would probably have altered the blood cortisol levels that I was there to have tested. When they sent me the appointment and site map they'd have known a lot of it was closed due to building works but did they let you know, did they heck! My usual plan is to go anywhere very early, this means however long it takes me to find the place, I've never yet been late. If you're anything like me Sunny, you'll be really glad when it's over.

[Sunny Clouds]

Yes, glad when it's over.  I confess to being genuinely frightened attending hospitals and clinics these days, and I'm concerned I may have a panic attack.  The appointment's not this week, yet I'm already in a state.  I keep telling myself to get it in perspective - it's not me that's poverty stricken now and struggling with the practicalities of this sort of stuff.

As you know, my other tactic for dealing with stress is humour so let me cheer myself up by reciting the old military joke based around the old military requirement to parade five minutes before time stated.

The General decides to attend a parade and that he wants the parade to take place at 0900 hours.  He tells his aide de camp to get the soldiers on parade for 0855 hours.  His aide de camp passes the message onto the LtGen to get the soldiers on parade by 0850 hours.

The message works its way down via all the ranks of officers, warrant officers and NCOs, involving various administrative staff along the way, sometimes across to an 'oppo' (same rank, different unit), back up a bit and then down again.  The soldiers are there on parade as required at five minutes before the time stated by the junior NCOs.

At 0600 hours.

So the NHS has sent me my 'marching orders' stating 'parade' time at 1200 hours, with a specific requirement to be there five minutes before the 'parade'.

As a well trained veteran, I shall thus be on 'parade' at the 'field hospital' at, erm, when?

Let's see, I spoke to 3 people on the phone, had two texts, had a letter, checked the website several times, had advice from other Ouchers, visited the bus company website more than once, visited various bits of Google...

1200 hours, minus 5 min, minus 5 min,  minus 5 min...

Yes, I shall make sure I'm on 'parade' by, erm, 0900 hours?

(Or take a taxi.)

[ally]

I was sent a letter last month, for a telephone consultation this week.   Since I’m profoundly deaf, and, can’t use a phone, I can’t do it.   I’m not going to stress my husband and myself out,  by using him as a three way system.  It’ll take twice as long, as he has to listen to them on the phone, sign to me, etc.   He has repeatedly tried to ring them since the letter arrived.  Every time he calls, there’s no one answering the phone.  I think I’m going to ignore the call, as a telephone  consultation takes away my independence.  I’ve been going to this pain clinic for years now.  They know I’m profoundly deaf, it’s on the front of my hospital file.  Most times, I have an interpreter booked by them.  So, why send me a telephone consultation?

[Fiz]

Wow ally that is shocking. I think if it were me I might answer the call if it rings at the appointed time and immediately say "I am profoundly deaf and have a booked interpreter for my appointments with you so I am unable to hear what you are saying please can you rebook a more suitable appointment for me and send me the appointment by letter. Thank you" and if you like repeat the same sentences if you feel they are still on the line or just put the phone down having said that. I suggest that because I know that the NHS don't send out new appointments for people who haven't turned up for their appointment and not answering the phone counts as you not turning up and you may just lose the service you may need. You're right not to involve your other half, the NHS need to make suitable arrangements. They can do 3 way video calls with an interpreter for example.


Sunny, if I haven't got to my appointment 15 minutes before the stated time then I am late in my book!

[ally]

Fiz,  I can’t hear a phone ring,  I can’t hear myself talk, and, my speech isn’t perfect.  If anyone has to tell them how wrong they were with the phone consultation, it’ll have to be my husband.  I think he’ll need to say the same things as you’ve mentioned above.   I’m still on the waiting list for a spinal op at this hospital.  I’ve been in limbo for two years now.  I’m past caring now, as my friend, who is a nurse, has spoken of people she knows who have contacted covid from various local hospitals after admittance.   I’ll let you know what happens, if anything, that is

[Sunny Clouds]

Arrange an interpreter?  Not necessary, because as almost every hearing person knows, all Deaf people have super-duper technological something-or-other that's switched on at the ready all the time so that as soon they get a call from a hearing person, they press a button and hey presto, they're instantly plugged into that interpreter, so all the hearing person has to do is talk to that interpreter in a call centre somewhere who's translating back and forth between the Deaf person's sign language or the Deaf person's written word.  The hearing person doesn't have to ensure it's available, pre-arranged or anything. 

Honestly, anyone would think 'reasonable adjustments' might include, erm, doing something.   

That makes me think of the number of times I've been told to send a photo of something and I point out that it'll take time because in order to do so, I'll walk 35 min to a shop that sells disposable cameras, buy one, walk 35 min back, total an hour and a half including checkout time, same time to take camera in for processing, same time some days later to pick up pictures.  Four and a half hours plus costs, spread over 3-7 days.  ?!  But surely everyone, absolutely everyone has a smartphone?

At least if I don't have one, it's a matter of choice, but for loads and loads of people, as it was for me in the past, it's a matter of cost or even a matter of ability to use one.

I've got it!  That's what PIP's for!  Ally, all you've got to do is to use that over-generous allowance paid to us benny scroungers to pay for 24/7 instant telephone interpreter connection.

Now a less ironic response from me -

 

[Fiz]

I replied earlier but the post froze then said the site could not be reached. If the internet could save posts before that happens it would be much appreciated! 


I wondered ally if your partner could answer without disclosing who they were because the NHS et al assume partners are privvy to all of your personal information and they just state they have been asked to answer the call because you are deaf and normally have an interpreter arranged for appointments and please can they make more suitable arrangements for your appointment as you are unable to communicate by phone? And plead ignorant to any further information if asked and just ask for the more suitable arrangement for a new appointment to be sent out by letter.


It's really poor that this has happened and it must be very stressful. I just worry that the phone not being answered would bump you out of the service.


Hugs 

[Sunny Clouds]

Fiz's suggestion prompted my mind to drift onto the naughty line I take with certain sorts of nuisance phone calls when I'm in the mood for stringing them along.  Someone calls and I answer various questions, but maintain a puzzled air.  Then at what I judge to be the right time, I say something like "I think you'd be better off talking to head office about this.  We don't really have any control over the budget here in the cleaning department."

It's as well I'm not Ally's husband.  On a bad day, a call from a hospital could produce a response like "Discuss her care?  Thank goodness you've called.  She's been quite worried about how soon someone from the clinic was going to get in touch to say they'd organised an interpreter-supported interview for her.   When have you arranged the interpreter for and in which building?"

Nevertheless, a more seriously worded response treating it as a call to sort out interpreter arrangements rather than to discuss care might be worth considering.