Why can't they.......

…put this info on my wife’s medical records?

With several other problems besides her inability to weight-bear (and therefore to walk) she has many hospital appointments, we won’t get through a month without one and there’s often two or three in a month. Whenever she has a new hospital appointment I have to phone and inform them that she will need a hoist and a sling for any transfers, (we’ve had a couple of apportionments aborted in the past cos nothing was available).

She also gets many appointment which are just too early in the day - the most recent for an MRI scan on a painful knee (four years now and still unexplained) which is for 7.00 am in Southampton!!

Four mornings a week she has a paid carer who arrives at 9.00 and is finished by 9.45, (it’s pretty much the same when I do it) - add another 15 minutes for contingencies and we can leave by 10.00 - if she wants to use the commode, add another 30 minutes minimum - another 40 minutes for the journey, plus 20 for the two hoist transfers from the car - add another 15 minutes for parking and getting to the appointed place and it’s now 11.45. She frequently gets appointments for 10.00 am or 10.15 or 10:30, and every time I have to phone and get them changed.

7:00 am is definitely not happening, damned if I’m getting up at 3:00 am (extra hour for me to get ready) for a hospital appointment.

Ayjay, that’s ridiculous.

Our hospital has a booking appointment dept.
Why not ask at your hospital reception or consultant where that is and write to them
about not getting this early bird booking ?

There’s four different hospitals involved, it happens at all of them.

I’m going to wait until the actual letter arrives for this latest appointment and use that as a base to try and get something done.

If they can’t do it when I change the appointment time I’ll get in touch with the NHS Digital Dept which as far as I can see has control of this info, if that’s no good I’ll call in and see our GP.

So frustrating. This sort of inefficiency winds me up. Makes a rubbish situation even more stressful and MUST cost in terms of adminstration.

From friends who work in the NHS, I think if 4 hospital involved they are very unlikely to share the information (which is crazy). You may be able to sort for each individual hosptal, but I suspect even then this may be sadly beyond the systems they operate with. Defintiley worth an go tho. Good luck.

I made a couple of phone calls about this today, and I’m told I can get information/instructions added to my wife’s details by contacting her GP.

I’ll let you know how I get on.

I’m having to ramp this up a bit now, it’s still happening despite all of my efforts so far to sort it out.

I checked on last years calendar before I binned it and she had a total of 32 appointments including a couple each at Doctor and Dentist.

I had to change one appointment that we received a few days ago and the person I spoke to said that she could add it as an “Alarm” that a hoist was needed for transfers, but I’m not convinced it will happen and they weren’t sure about making a later time the norm for appointments.

Discussing this on a Facebook page for MS carers, it seems to be a common and recurring problem across the whole country.

Letter now sent to our GP and emails to the MS Nurses and Patient Experience @Southampton General.

My wife has MS and several other conditions which all involve regular hospital appointments. Due to her condition and the rigmarole of getting her (and myself) washed, dressed and toileted she is not able to attend appointments early in the morning. Many of her appointments are in Southampton, a 45 minute drive from New Milton. Once you factor in the transfers from wheelchair to vehicle and vice versa which takes about 15 minutes each time (both her and her wheelchair have to be hoisted in and out of our vehicle) and the problems of parking (at Southampton General in particular) the whole journey from our front door to hospital reception desk takes 90 minutes.

She has carers that come in on four days each week, they arrive at 9:00 am and finish at 9:45, although my wife is often still sat on the commode at 9:45 and I then finish things off, usually by 10:30. If you now add the 90 minutes on to 10:30 it’s midday.

Every time we receive an appointment letter I have to telephone the hospital and re-arrange the appointment as it’s always too early, (the worst one so far was for 7:30 a.m.)! I also have to remind them that a hoist will be required for any transfers as my wife cannot weight-bear. This always seems to come as a complete surprise, and one appointment that she attended had to be aborted and re-arranged due to this apparent lack of knowledge.

My wife has both an NHS number and a Hospital number which are shared by all four of the hospitals that she attends.

How can I arrange for any appointments to always be scheduled for after 11:30 am and also be confident that a hoist will be available without having to go through the whole process of phoning the hospital every time and changing the appointment? As my wife’s full time carer it’s not as if I don’t have enough to do already!

Good luck with battle this Ayjay, keep us posted.


As an aside, on another unrelated forum, there’s a discussion about the campaign to get every eligible woman going for her cervical cancer test, aka the smear test BUT hundreds of disabled women are complaining they are unable to get the tests because GP surgeries don’t have hoisting equipment…and smear tests arent done in hhospitals or residential homes. …
Personally I’d have thought this is against the discrimination laws

Sorry Ajay, back to you now

Early days yet, but no progress to report so far. It’s proving quite difficult to email the MS Nurse Team. The last MS Nurse we saw a few months ago gave us an email address, the email I sent there was returned with a reply that says, in short:- "All emails coming from patients will have to go through My Medical Record for Information Governance reasons. The MS team will NOT reply to any patient emails from now on"

I’ve now signed her up to My Medical Record (it only took four days of to-ing and fro-ing!). That’s still showing the appointment that I phoned and changed on 23/5/19 as being at the same time! (or to be completely precise it’s actually ten minutes later than on the appointment letter). I might try adding the info to her details as an allergy, I can’t see any other options yet, but I’ll take another look when my head stops spinning. I found a possible option on there to email the MS Nurse, (buried about five pages deep into the website), but you have to choose from a drop-down box whether to email the MS Nurse or the Neurological team - the drop-down box doesn’t appear to be working so there’s nowhere to send the email. I’ll try that in a different browser tomorrow.

I’ve sent a copy of the same email/letter to the MS Helpline this evening and I’ll continue to search for people to pester, someone must know something.

So, just to recap, waiting for a response from - NHS Facebook page - Southampton General Hospital - GP Practice - MS Helpline - and possibly MS Nurse if I can get an email to them.

I think some NHS employees, mainly administrators, just fail to grasp the fact that some patients have special needs.

You come when we tell you, or we strike you off. A little power trip for a Jobsworth…

That is yet another failure by the NHS training wise, but to some it’s common sense.

Completely off-point but my Mum is due a delivery of Pads soon, after three attempts and roughly 20 minutes on hold a lady answered, I can’t access that information, I don’t have any idea but I can take a message. I think it was probably the cleaning lady who answered.

Is it just me. or is the NHS falling apart?


Ayjay, Have you heard of NEPT ( Non Emergency Patient Transport)
Your wife would be entitled to use it. The first time has to b e done through your surgery, after that you do it yourself.
My husband has to use it for hospital visits as I am unable to push him in a wheelchair.

Have a look at the link. It’s worth a try.

We had the misfortune to use Hospital Transport last year, here’s a condensed version of what I said in response to another complaint about it :-

I had the misfortune to have to use hospital transport last summer, there was no discernible suspension to the vehicle, my seat was just a hard uncushioned seat in the back and my wife was in her wheelchair. It was the same model of vehicle there and back but two different vehicles and the ride was equally bad both ways. Coupled with the four and a half hour wait for the ride home I’d say it’s right up there as one of the worst days of my life. >

There has been some progress on the appointment problem: I had to phone about the appointment that I changed on the 23/5/19 as we’d still not received a letter with a new date. Once that was done, i then had to phone to alter the follow-up appointment (which had to be six weeks after the Steroid Injection of the first appointment).

I (very politely) let rip at this person (think anguished breakdown rather than personal tirade) and she says that she’s added a note that all appointments should be after 12:00. We’ll have to see how that works.

I also had a reply email from the MS Nurse team this morning, so my original email did get through after all. It doesn’t help much at all unfortunately, and I’d been banking on them to be my best bet. Reproduced in full here:-

I have contacted patient services who organise appointments, they have assured me that any alert on the system may not be seen, but the best option would be to inform the nurse requesting the appointment to write your needs on her form that is handed to patient services.

I am unable to confirm about a hoist at all appointments, it would be best to phone that department prior to the appointment to ask if they have one and if not they maybe able to loan one for the appointment if required.

I hope that this helps.

I’m so sorry Ayjay.
Regarding the MS Nurse, the words ‘pillar to post’ spring to mind’
Would it be worth trying to find out who is your County Councillor for Adult Social Care. Send them a polite ‘let rip’ about the treatment ( or lack of it) your wife and yourself are receiving?
It worked for us when I did that and ‘let rip’ about a number of issues.
I do so hope things improve for you soon.
Keep up the pressure on all the Agencies you can.

Up to this morning the only response I’d had from the four emails and one snailmail letter I’d sent was from the MS nurses team which didn’t help at all. I sent off another two emails a few days ago to patientsupportservices@uhs.nhs.uk and helpline@patients-association.com and this afternoon I’ve had three responses ( possibly a bit of co-ordinated thinking going on somewhere in the bowels of Soton General), the most useful of which came from patientexperience@uhs.nhs.uk which was one of the four original recipients, it says:-


Your wife’s file does have several notes on it which states that a later appointment time is preferred; however this is only useful if the member of staff booking the appointment goes into the notes section prior to booking appointments. Therefore I have contacted another team who are responsible for Accessible information as they are working on a series of flags which can be put on patient’s files to alert staff to specific requests and support needed. They are in the process of developing a flag to notify staff that patients require appropriate appointment times.

Thanks Ayjay, I’ll remember that for M and me, and pass it on to other friends as well.

I hope it’ll help someone, I mentioned it on a Facebook page for MS carers and it’s a common problem up and down the country, but I’m guessing that it’s a long way from being the finished article yet.

I shall respond some time in the next couple of days and ask them to let me know when it’s been implemented, (then I can really give someone an earful for an inconvenient appointment time)!! :mrgreen:

Keep us posted, Ayjay.

Having my own battles at the moment re a hospital appt for me and the timing to fit in with my caring duties … I couldn’t get through by phone to change it, so emailed them. They left me a phone message asking me to ring them… :unamused:


I wonder why, when Amble mentioned non emergency patient transport (NEPT), did I think of the word INEPT?

Oh lord, we shouldn’t laugh, but… I hate how hard everything has become to get help and support. If I didn’t laugh I would weep.