Ouch Too

Forum => Talk => Topic started by: Sunny Clouds on 29 Nov 2021 07:13PM

Title: NHS clinic access
Post by: Sunny Clouds on 29 Nov 2021 07:13PM
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?
Title: Re: NHS clinic access
Post by: Fiz on 29 Nov 2021 08:09PM
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.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 29 Nov 2021 08:28PM
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.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 30 Nov 2021 11:08AM
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.
Title: Re: NHS clinic access
Post by: oldtone27 on 30 Nov 2021 11:38AM

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.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 30 Nov 2021 02:18PM
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.

Title: Re: NHS clinic access
Post by: Sunny Clouds on 30 Nov 2021 06:54PM
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.
Title: Re: NHS clinic access
Post by: Fiz on 30 Nov 2021 11:33PM
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.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 01 Dec 2021 12:33AM
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.)
Title: Re: NHS clinic access
Post by: ally on 01 Dec 2021 07:59AM
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?
Title: Re: NHS clinic access
Post by: Fiz on 01 Dec 2021 08:47AM
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!
Title: Re: NHS clinic access
Post by: ally on 01 Dec 2021 02:39PM
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
Title: Re: NHS clinic access
Post by: Sunny Clouds on 01 Dec 2021 03:19PM
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.   :f_doh:

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 -

Title: Re: NHS clinic access
Post by: Fiz on 01 Dec 2021 04:53PM
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!  :f_erm:

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  :f_hug:
Title: Re: NHS clinic access
Post by: Sunny Clouds on 01 Dec 2021 06:39PM
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.
Title: Re: NHS clinic access
Post by: ally on 02 Dec 2021 03:41PM
Due to the virus we’ve had, and it’s been ongoing for over two weeks now.  My husband dropped me off at the surgery.   He couldn’t come in with me, due to where he was parked.  The surgery is next  to a school, and, McDonald’s.  It’s rare to find a disabled bay, as it’s used by parents or those at McDonald’s.  Despite being behind a glass screen, the receptionist wouldn’t lower her mask.  She finally resorted to writing down what she was saying.  However, she then carried on talking.  I felt frustrated and annoyed.  From what I can gather from her notes,  I’m going onto a waiting list for triage.  Whatever that is, and, when, I have no idea?.  I’ve come to the conclusion the deaf no longer have a NHS a service.  If I was living alone, I’d be up the creek.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 02 Dec 2021 04:03PM
Triage is a term with wartime origins that's become vaguer and vaguer.

Originally it was dividing casualties into three ('tri') categories to prioritise for medical care.  Lowest priority = those expected to die anyway even with medical care.  Middle priority = those that would probably survive even without medical care.  Top priority = those that will only survive with medical care.  As a former combat medical technician, I've used it in that crude sense.

The term is used more widely now, e.g. some GPs have 'telephone triage' services where you phone up, and the GP decides whether he can advise on the phone, whether he needs to see you, or whether you need to see someone else.  In a hospital or clinic, it might mean prioritise patients for healthcare in more detail.   The meaning/usage of it has extended now to the point at which it is often just used to mean 'decide when we can fit you in' or 'try to find someone who can fit you on their waiting list'.

As regards the receptionist, I suddenly thought - I think if I were feeling bolshy I'd want one of those whiteboards with an easy-wipe pen.  Scribble "Please respond thumbs up or thumbs down."  Wipe.  "Are you going to see me today?"

Actually, in all seriousness, I think I may try that for my appointment if what's said is too blurred and mumbly.  I wonder if you can still get those grey boards you write on with a sort of plastic stick, then pull or turn something to write it?  Toy shop here we come.

I have such mixed feelings when I read what you write, Ally.  On the one hand, I feel shared experience, and so I feel less alone with my experiences.  On the other hand, a bit of me is shaking my head at myself "And you think you've got it bad, Sunny?"
Title: Re: NHS clinic access
Post by: Sunny Clouds on 02 Dec 2021 07:20PM
I’ve come to the conclusion the deaf no longer have a NHS a service.

Did the NHS ever adequately provide for deaf people?  I'm not sure, but I think maybe better than now.  I find it difficult to judge because I've had so many poor experiences.

I've actually spent a wasteful chunk of today mentally whingeing about the absurdities of this.  I reckon at my nearest general hospital the most disability-unfriendly department is A&E.  Ditto the next nearest.

Then again, I remember visiting an eye A&E a few years back, stumbling in with my white cane and trying to explain that no, we don't all see glossy black on bright yellow easily.  Depending on your vision problems, it can be much harder to see than black on white.  Oh dear, how dare I have the wrong sort of visual impairment?  That was an eye clinic, of course the adjustments they had made for a stereotypical eye patient must suit absolutely all their patients.

I know that there are limited funds, limited resources etc.  But there's so much that could be done that would cost next to nothing. 

Something that always bugs me about this sort of thing is that it must be stressful for front line staff as well.  If you don't adjust for a patient's individual needs (within reason) patients don't turn up or they turn up at the wrong time or they turn up with the wrong information or whatever. 
Title: Re: NHS clinic access
Post by: oldtone27 on 03 Dec 2021 03:17PM
It just occurred to me that if you have a smart phone could that the be used for the other person to speak into so it could be converted into text?
Title: Re: NHS clinic access
Post by: Sunny Clouds on 03 Dec 2021 04:14PM
I don't have a smartphone but mentally I'm mapping it onto autogenerated subtitles on Youtube.  I wonder whether an app to do that would be expensive.

We live in an age with so much potential but still it's limited in terms of what people can afford.

That being said, else-site someone mentioned living somewhere where they give phones to homeless people.  Wouldn't it be lovely if profoundly deaf people were entitled to a free smartphone on the state? Well, I can dream.  Who knows what the future might bring.
Title: Re: NHS clinic access
Post by: Fiz on 03 Dec 2021 06:29PM
Apps are often free and that sort of app would be relatively inexpensive, ie if non profit £4 a month at a guess, you'd just need a smart phone to operate it even if it were free. There are free apps that help people with disabilities but they're funded by an advert every 10-15 minutes which wouldn't be ideal if you needed no pauses and constant use as you would for translation but I doubt the cost to be advert free would be much. Might be worth looking into. I'd be lost without my smartphone for the help it gives me.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 03 Dec 2021 08:29PM
I'm beginning to feel like the last person on the planet without a smartphone.

That being said, I have a sense of being totally out of my depth trying to choose stuff like that.  I get very, very depressed, and whilst I can mitigate some symptoms with things like outpouring/chatting, and silly humour, it impacts heavily on my ability to  make decisions.  To put that in context, it took me over a year to choose a new washing machine after my old one died.

I've just paused to do a search for 'speech to text app' and found that some apps/software for both smartphones and desktops/laptops appear to be free, but I've no idea how good they are or quite which devices they are or aren't compatible with.

I ought to get my act together on all this because I'm pretty sure my hearing's getting worse.  Ironically, in many contexts I've benefitted from mask-wearing in the pandemic.  No, really.  You see, people are now getting used to the idea that people they speak to may mishear them or may not hear them at all. 

Reading about what Ally's up against thus has three benefits for me personally - not feeling so alone with my problems, feeling better on an 'it could be a lot worse' basis, and reminding me to plan ahead.  What she needs now, I may need in future.

Not that that's much consolation for Ally, save that maybe it helps that we can appreciate it's tough for her.
Title: Re: NHS clinic access
Post by: Fiz on 03 Dec 2021 08:53PM
I'd be very surprised if you didn't find a free app Sunny were you to get a smart phone.

From the viewpoint of a technophobe, I bought an apple iPhone for 24 hours, couldn't understand a mb of it and took it back and thankfully got a full refund, they are not beginner's phones. Apple (Mac) are for the more tech literate imo and possibly able to do more but from what I hear the add ons cost money whereas Android phones are simpler and most apps are free.

My first smart phone was a Samsung Galaxy and as a technophobe, it was perfect. I totally understood it and could handle it. I'm now onto a Pixel phone which is a Google firm, I switched to them as you get more phone for less money but it has several drawbacks and occassionally I wish that I hadn't switched. Of all that I have used, Samsung Galaxy have been the simplest and I suspect I will return to them next time I need a new phone.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 03 Dec 2021 11:06PM
In due course, I need to sort that, then.

That being said, I'm using a 10 year old desktop.  My browser and operating system are now out of date.  A few months ago, I bought a laptop to back up everything on prior to upgrading my desktop.  A neighbour came round and helped by making Windows 10 look more like Windows 7 and by downloading something for me that will work with my libre office.

So one step at a time.
Title: Re: NHS clinic access
Post by: ditchdwellers on 04 Dec 2021 07:41PM
I had to get a  new smartphone a couple of weeks ago as I could no longer use mine to do my online banking due to the operating system being so old!
I went with another Samsung as that's what I'm familiar with and it cost £150.00 directly from Samsung. I swapped the SIM card over and once it was set up I could start using it.
There are so many Apps available and the only one I pay for is Spotify which is linked to our music system.
Title: Re: NHS clinic access
Post by: ally on 04 Dec 2021 09:29PM
Sunny you might find the galaxy note mobile helpful.  I have one.  It has a pen attachment, and, you can use it for writing.  I pass the phone over with the pen for people to write down what they’re saying,  if I don’t understand them. It’s a lot more convenient than lugging a pen and paper around with you.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 04 Dec 2021 09:52PM
For one glorious moment, I thought you meant they've invented a smartphone that you can communicate with entirely in writing.  Why would that appeal?  One factor that's been key in my not getting a smartphone is the sense that I can't cope with using fingers on a screen to operate it.  When using my desktop computer, I type by feel.  I don't actually remember where all the letters are, so when occasionally I type by using  just one hand and look at the keyboard, I do quite a bit of searching. 

We adapt to new things, though, don't we?

Meanwhile, I've photocopied the pages of my appointmnet letter that I put info on to hand in.   I always find these questions interesting.  Why do they ask about diabetes, eating disorders, osteoporosis etc. but  not about sensory impairments or ataxia etc.  They ask about arthritis, but not which joints.  I suppose they wait until they tell you to hop up on the couch to discover whether it's in your hips/knees.

Gosh, I'm grumbly.

I'm going to have to work hard not to project my grumpiness onto the staff.
Title: Re: NHS clinic access
Post by: Fiz on 05 Dec 2021 06:56AM
More and more companies do communicate with customers by messenger (owned by Facebook) which is a typed conversation and apparently some do video calls via WhatsApp and they can be signed. Things are changing slowly!
Title: Re: NHS clinic access
Post by: ally on 05 Dec 2021 10:30PM
Masks are starting to  freak me out.  I wasn’t expecting to get an apt at the surgery.  However, they decided to see me, as I can’t have a telephone consultation.  Unfortunately, the GP who I’ve seen before decided not to remove his mask.  I sat there trying to tell him I couldn’t understand him.  That didn’t register, and, he continued to talk.  The mask was moving so I knew he was speaking to me.  When I didn’t  answer, or, speak to him, he tried again.  By this time, I was ready to walk out of the door. Then, hallelujah, he lowered his mask, and, asked if I could read his lips. 

My deafness, and, audiology chart is on the computer system.  The audiology chart is more or less a flat liner, so, why would he presume I was able to hear him?  Sometimes, I wonder why GPS, receptionists etc have little common sense when dealing with the deaf.  The dentist wouldn’t lower her mask either.  She wrote what she was saying down on paper.  If the NHS GPS etc are so afraid of covid. Why don’t they ask patients to have a lateral flow test before the appointment?  I took covid tests before both appointments above.  The test kits are free, and, easy to use.  It would save so many problems, especially for the deaf.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 05 Dec 2021 11:41PM
I'm lucky that the GPs in my usual practice are good.  You know the GPs in your practice and what they're usually like so I'm not challenging your judgement of the GPs you know.

However, in general, I do have some sympathy with GPs over masking, and I say that as someone who, whilst not as dependent as you are on lipreading, am heavily reliant on it. 

You say do a lateral flow test and that's logical but sadly they wouldn't know whether you had. 

GPs are under so much pressure that not only are GP numbers still decreasing, more and more GPs are resigning from partnership to take salaried jobs, which in effect means they can limit their hours and get less aggro.

The BMA did some research last summer and found that over half the two thousand GPs who responded said they have mental health conditions such as anxiety, stress, burnout etc.

You may say well doctors are stressed anyway, hence the horribly high suicide rates in the profession even before the pandemic, but the aggro they have been getting during the pandemic, like the GP in Manchester who recently had his skull smashed by an angry patient, takes its toll.

Meanwhile, they see how people with covid-19 can suffer, and they can read what doctors with long covid say they're going throuh, and they can read what doctors with ME/CFS say about what they go through, and be frightened.

What I find difficult about all this is that I think that it would have been perfectly feasible for the government, instead of lining the pockets of their mates with scandalously high sums for basic PPE, a lot of it unusable, had kitted doctors out with really good stuff, including, by now, adequate supplies of masks with clear panels in the middle to facilitate lipreading.

Meanwhile, over time I've been asking various health professionals and receptionists etc. a particular question and the response is consistent.  I ask whether there's a field on the screen that first comes up when they type in your name that contains information about your communication or access needs.  Everyone I've asked has said no.  It's expletive ridiculous.

So as I say, you know your GP, and what he did or didn't already know about you and what you'd normally, reasonably expect.  I trust your judgement on that.

By contrast, I think a high proportion of GPs and other health professionals are on a hiding to nothing over this.

I'm still dreading my appointment next week in a secondary care clinic.  I'm less fussed about whether they're ok to take their mask down than whether they're ok to repeat, gesture, write etc.  But it's the same underlying problem.

Big hugs.

Title: Re: NHS clinic access
Post by: Fiz on 06 Dec 2021 08:28AM
Thing is, masks protects others rather than yourself mostly so medical professionals have a duty to protect you by wearing their masks. I totally understand why a professional may choose to write down what they want to say rather than lower their mask due to their concern about wanting to protect you from Covid especially as they are much more likely to be carrying the virus and breathing it out as they are in close contact with so many people. Personally I think there's an argument for someone signing to say that they'd like the health professional to lower their mask and understand that this increases their risk of getting Covid from the health professional but also as there's also a smaller risk of them getting Covid from you then by lowering their masks they are increasing the risk of gaining the virus and passing it on to their following patients so it's not just the risk to you but it increases risk to all of their patients when they do so. I think clear screens are the way to go with a face to face desk for people with hearing difficulties and if they had one such room for consults with hearing impaired patients the GP could move to that pre-booked room to see the individual needing to see their faces which would solve the problem in GP surgeries and at reception area desks but not for dentists who are very up close and personal. I think this pandemic is hardest of all for the hearing impaired than any other group of people. I can't wait for it all to be history  :f_hug:

Title: Re: NHS clinic access
Post by: Sunny Clouds on 06 Dec 2021 09:42AM
I find it difficult the way my hearing aids distort what people say, but thinking of what Ally goes through puts my difficulties in perspective.

I think screens can be really good, although they have to be properly done.  There's a bit of research that seems to suggest that in some workplaces, they've caused problems where there's been enough screening to reduce airflow, but not enough to form a proper barrier, so it leads to what I think of as puddling of the virus.

But you'd think that if someone at national level got their act together, they could have come up with something suitable.   I'm thinking how there are various sorts of hazmat equipment used in relation to other things.  Sort of see-through tent-like things.  I bet in this day and age a sort of cubicle thing would be 3D printable.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 06 Dec 2021 01:11PM
Thinking of what Ally goes through, I think if I were sitting with a GP who knew me and I was totally reliant on lipreading, I'd be in tears.  Here's where I'd meet OtE half way on something (but I don't think he'd meet me halfway) which is that while I don't think people should be obliged to use official sign interpreters as he's said here, I do think we need far wider availability of sign interpreters, even if in some places, for want of better, it's a pool of local volunteers for urgent appointments.

I say that as someone who's acted as an impromptu oral interpreter between a neighbour and a doctor.  My knowledge of some languages is basic, so we had to make do with me translating the doctor's English questions into Urdu and translating my neighbour's Punjabi responses into English.  (Sort of like Italian + Spanish or like Dutch + German.)  But it was enough for what was needed to get an urgent visit followed by more professional translation help. 

There also needs to be more recognition by senior staff who set the rules as to people needing help rather than blanket 'go into your appointment alone' stuff. 

I don't think in many places, and I mean even before the pandemic, there's enough recognition that people may need psychological support; or for others, to blend concepts, a 'dementia-speak interpreter' or a 'psychotic delusion interpreter'.  In relation to the latter, in all seriousness, I believe that a lot of psychotic delusions actually make perfect sense if you see them as metaphors for what others perceive as reality.  If you know someone, you can often 'translate' the delusional stuff into the reality it symbolises. 

When I get like this, depressed & stressed => longwinded, I used to be labelled manic and given loads of meds to damp me down, so I got even more depressed, talked even more, and so the circle would continue.  This isn't "I don't get manic", this is "Me rabbiting and going off on tangents is me feeling rough, being depressed and doing my best to cope.  Thank you for helping me, folks, because I can mentally take you with me to my clinic appointment later this week.

And I'm sorry (slightly), Ally, but I'm going to picture you coming with me and if I have any communication problems, teaching me the signs for a range of expletives.  But I know the sign for "It's not my fault for falling over, you barged into me, so stop giving me grief."  I use the traditional two-finger one but I understand the modern one is the middle finger.  Oh, that's not BSL?  Oh well, people seem to understand it anyway.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 06 Dec 2021 04:04PM
I was about to leave the house when I got a call on my mobile.  I couldn't work out what it was to begin with, thinking it was a wrong number.  Then I realised it was the clinic about my appointment.  I couldn't work out to begin with whether they were saying they were cancelling my appointment or confirming it but finally worked out they were cancelling it.

I can't get my head round how so many people can't get their heads round the notion that some of us only use mobiles for emergencies and texts and, in my case, taxi service.  Dial.  Incomprehensible speech.  Pause.  I press 1 to be picked up at home, 2 to be picked up where they dropped me off.  I don't need to know what the machine is saying, unless it goes on for longer than usual, which tells me to phone them from my landline to find out what it's telling me.
Title: Re: NHS clinic access
Post by: Fiz on 07 Dec 2021 07:56AM
I have to say the fact that it was ally's own GP that didn't respond adequately and was totally ignorant of needs totally shocked me. It makes me so grateful for my GP, although I always have been, because she's so good and knows me very well. I think writing to the practice manager might be an idea if feeling able to.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 07 Dec 2021 09:46AM
It is shocking.  I wouldn't have thought of writing to the practice manager, though, but that's because my GP has a traditional practice, so the manager would be employed by the GP and all they could do would be to put the letter on their boss's desk for him to deal with.

But if it's one of these new big chain practices taken over by private companies, then I suppose it would go up the non-doctor heirarchy. 
Title: Re: NHS clinic access
Post by: Fiz on 07 Dec 2021 10:50AM
My GP surgery is independent but the practice manager deals with complaints there. I really hope the surgery remains independent, all the other surgeries in my town are part of the same chain and I am aware that their service quality has dropped significantly since joining the chain.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 07 Dec 2021 11:42AM
My GP is past retirement age and he's a really good GP. Sadly not perfect, but I've a suspicion he's a human being (!)  His is a teaching practice, so there are always some registrars (or whatever the modern term for them is).  He's got a couple of long-established salaried GPs there, too, and I'm hoping that when he retires, they'll take over.

As regards complaints, I suppose I see these things on a spectrum because of the variety of set-ups.  My GP and his practice manager have been working together so long, if he wasn't married, I could think she was his wife.  Usually I only have a word with her if I'm trying to save my GP time, but then she's an amazing community networker, asking patients to help one another.

It may be naff, but I carry everywhere in my handbag a thank you card from them and at their request I posted a compliment on NHS choices.  So I suppose for me, with my GP's practice, my instinct would be quiet grumble to the practice manager or formal letter to the GP  (which with that GP I'd probably put a marker on saying 'not to be added to official records' because I'm so grateful to him for all he's done).

But another practice could function very differently and prompt a very different course of action.  That's where I value people's instincts for what the power structure is of something like their GP practice.  For some GP practices (and other organisations) you go in hard.

But the structures are so
Title: Re: NHS clinic access
Post by: Fiz on 07 Dec 2021 01:13PM
I would have no clue who the practice manager is at my surgery and I have never contacted one. The office staff are all behind the scenes here so I think the only way people would know the practice manager's name is if they felt the need to complain but I am not sure.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 07 Dec 2021 02:29PM
I think that's one of the difficulties with trying to sort out problems in the modern NHS - not just fragmented, but the same sort of service operating very differently in different areas.  I don't mean personalities or little things, I mean down to management/power structure.
Title: Re: NHS clinic access
Post by: Fiz on 07 Dec 2021 03:49PM
I'm thankful that I have never had cause to complain or seek change to the services from my GP so as far as I am aware the system here may work really well, I certainly don't hear differently. Even mentioning to my GP my difficulty queuing for my flu jab had her offer to give me next year's during a routine appointment. I just find they can't do enough to help you. That's what saddens me about ally's GP who appears to be total opposite of that.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 07 Dec 2021 05:49PM
I saw my GP a couple of years back about something and was really put out by his response.  He's a doctor who usually takes his patients seriously.   My difficulty, though, is that I grew up with parents who never seemed to believe anything I said about my health, and then when I was getting more assertive as an adult, I landed in the modern mental health system which, to use a word that some might consider over-used, gaslit me. 

They behaved throughout as if my understanding of what was wrong with me was of no consequence.  There was a point about 15 years ago when I had postviral fatigue and they just put the symptoms down to my manic depression.  (This isn't "I'm not bipolar" this is "I had postviral fatigue as well as bipolar.)  A different GP also expressed despair over the HRT clinic and psychiatrist both attributing my PMT to my bipolar disorder.

So when my GP seemed not to believe me a couple of years back, I didn't push it.  Yet if I'd gone back and asked something else as if it was a new aspect, I'm sure he'd have dealt with it kindly. 

Since then, a long term friend (30 years) has told me off (in a kind, supportive way) for under-emphasising serious health problems.

I've got a real linguistic bee in my bonnet about miscomunication between health professionals and patients, usually by assumptions over how people phrase things and what jargon they use, plus the unspoken messages people health professionals give by their actions.  So whilst we can see what happened to Ally as indicative of inadequacy adapting for Deaf patients, it goes deeper than that.  That's not to diminish what Ally's going through, it's to say she's got an extra mountain to climb, but if the health service properly addressed communication with patients, it would benefit lots of hearing patietns as well as deaf patients. 
Title: Re: NHS clinic access
Post by: Sunny Clouds on 07 Dec 2021 08:33PM
I've written to the clinic about what happened to me.  Having thought about what was said here, I decided to write not to the consultant but to the senior manager in the organisation.  I expect it'll end up on a junior administrator's desk.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 08 Dec 2021 01:33PM
Part of me wonders whether I should go private.  The trouble is that the service I was referred to is provided to the NHS by a privte health company.

I have a devastating sense of loss of trust, that adds to my bad experiences in relation to a range of professionals, tradesmen, public services, utilities etc.  I am coming close to not trusting anyone about anything.  So difficult.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 08 Dec 2021 05:41PM
I just discoverd a text on my phone (normally kept switched off, usually looked at once a day but less if I'm not expecting any texts) confirming the appointment that the previous telephone call had cancelled.

If you're wondering why my phone was switched on to get the phone call, occasionally I use it as an alarm.  I was very, very startled to get an incoming call from anyone the other day, much less the clinic. 

I really, really wish I knew how to get the message through to more people that we don't all keep mobiles switched on all the time or use them for casual conversation.  For me, my mobile is an  'emergency' device, psychologically akin to an alarm/siren, coupled with with a 'letterbox I check a couple of times a week'.  I used to keep it on all the time, but then started getting spam texts and I'm not joking when I say it's normal for me to have a panic attack when it rings for a text or call (as opposed to the noise the alarm makes).

But then despite my trying to explain clearly, even good friends can't get their heads round the fact that I struggle to make out messages on my landline answering machine, so messages have to be shouted loudly, "It's Thingummy Wotsit calling on Wednesday.  Not urgent.  Not!"

Some people say buy a smartphone, but I don't think I should have to.  I make so few calls that last year, I got a text earlier this year telling me that if I didn't call someone or send a text, I'd lose my number, so I called a call centre and cut the call as soon as the automated wotsit answered the call.

I'm feeling very, very shaken by all this.

It's after dark, so I'm going to go for a walk.  The tears don't show in the dark.  It's wet and windy so by the time I get to a shop to buy the calorific junk food treat I want psychologically, people can think my eyes are just wet from the weather. 
Title: Re: NHS clinic access
Post by: ally on 08 Dec 2021 05:58PM
The pain clinic rang for my telephone consultation this afternoon.   It was the nurse I see every time I go there.  She was very apologetic from the onset.   Saying she had no control how the booking system book her appointments.  She was unsure before she rang if it would be ok.   She’s going to get me a f to f appointment.  One of the gps in our surgery has worn a plastic visor when she saw me  while ago.  However, every time we make an appointment we get a different GP.   It’s very frustrating.

As mentioned, I use a galaxy note mobile phone.  The pen attachment with the phone, means you can write down on the screen what you’re  saying, and, vice versa.  It’s very useful, and, it means you don’t need to lug a pen and paper around with you. Sunny I’m sorry you’ve missed an appointment  I don’t hear phones ring.  My phone vibrates and lights up when ringing, or, alerting me I have texts.  I ignore anyone ringing me, as I know it’ll be a scam, or whatever, as anyone who knows me wouldn’t ring, as they know I can’t answer.
Title: Re: NHS clinic access
Post by: Sunny Clouds on 08 Dec 2021 07:10PM
I'm glad that nurse rang you, Ally.  I hope she can sort it out well for you.

I don't think I want a smartphone at the moment, but who knows how soon I might decide the benefits outweigh the costs, so information about things ike your galaxy note are well worth knowing.

It's suddenly occurring to me that maybe it's possible to turn the ringer off on my phone.

It bugs me, as someone who currently has a very good GP with colleagues and trainees who are almost always good, when I hear of others having problems.  To me, it's daft.  Surely the extra time taken by problems arising from miscommunication can be frustratingly wasteful for a doctor as well as their patient?

But then I've had problems with hospital doctors and looking back on it and thinking of one who was a total nana, he was incompetent in a variety of ways.  If management clamped down on poor communication issues, they'd also weed out other problems.
Title: Re: NHS clinic access
Post by: Fiz on 09 Dec 2021 02:14PM
Oh sunny  :f_hug:
Title: Re: NHS clinic access
Post by: Sunny Clouds on 09 Dec 2021 02:43PM
Thanks, Fiz.

I tried to give feedback on the NHS Choices site today, but you have to give the date when you last attended the clinic.  Thus there is no way of giving feedback on not being able to access the clinic for whatever reason, whether that's physically or in terms of appointment communications.

I looked online, wondering if it would be worth going private, but this is a private clinic contracted to provide NHS services.  I just have an overwhelming, tear-inducing sense of yet another part of the world around me that falls into the category of "I can't trust them to do what they're supposed to do."

I desperately need help with a number of things, including some sorts of paperwork, but I've been ripped off by so many professionals, I struggle to pluck up courage to try to get that help any more.

And now I need to work out how to deal with my GP and his team over this clinic issue.  Will I now have been labelled 'non-attender causing problems for the referrer?  I bet I will.

Sorry to sound gloomy.  I'm really weepy about all this today.  I'm trying to get it together to go out to take my mind off things.  I know there's quite a bit of shopping that wants doing, but I can't even get my head round what.  Daft.
Title: Re: NHS clinic access
Post by: Fiz on 09 Dec 2021 03:46PM
Definitely not daft  :f_hug:
Title: Re: NHS clinic access
Post by: Sunny Clouds on 09 Dec 2021 07:05PM
I remembered what the shopping was.  Not shopping - picking up prescription meds.  I requested them a week ago then forgot.

Lots of kindness whilst I was out and then Ouchers to come back to. 

I think I might write a letter to my GP, or maybe the registrar at his practice that made the clinic referral.