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Why can't they....... - Carers UK Forum

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

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.........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 ?
Albert_1604 wrote:
Tue Jan 22, 2019 3:52 pm
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
Melly1 wrote:
Mon May 27, 2019 11:13 am
Good luck with battle this Ayjay, keep us posted.
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.