How do you cope with the number of hospital appointments?

[SecretOtherName]

Dad passed away last year on the same day Mum(78) was diagnosed with a lymphatic cancer which, after a tough 9 months the hospital is managing well with Rituximab and she is now reasonably stable again and has regained her lost weight etc. She has many other complex health issues (amyloidosis in remission after intensive high does chemo, reduced kidney function/borderline needing dialysis, diverticulitis, etc)

She is fine at home can cook take care of herself etc, but doesn't go out/have friends, and myself and my dsis visit most evenings and days at weekends for company. The problem we have is we both work FT and we are struggling with all the hospital appointments eating up all our annual leave (which I also need to cover dc school holidays, dsis has no dc).

She goes to separate appointments for renal/oncology/haemaetogly/gastro/dietician. Each consultant sees her every 6-8 weeks. Not to mention semi regular GP appointments for a hiatus hernia/general problems and dentist/audiology(hearing aids)/opticians etc etc etc.

I cant get the appointments on the same dates as each clinic are on different days of the week, they aren't flexible in giving out later in the afternoon appointments, oncology dr cant give the haemaetogly update. (I understand they cant easily be flexible). I cant just nip out from work due to distance/time for the round trip.

She could get to the appointments herself using taxi/hospital transport, but due to her severe hearing loss (and her petulant behaviour) doesn't try to understand what the doctor is saying and cant relay this back to us.

I would prefer we (and I don't mean it unkindly) let her go herself while things are stable and if they go downhill again we go as necessary, dsis thinks we have to keep going to every appointment with her to hear the latest update, even if nothing has changed.

Has anyone been in this situation and found an ingenious solution?

There will be options assuming she can pay. You might try a local reputable taxi service to see if they had a sensible driver would accept a block booking including an escort service. Or have a word with Social Services to see if there are either volunteers who might help, or for the names of care agencies who again might be able to provide escorts.

Or alternatively ask around at school, at the church or similar to see if you can find someone looking for ad hoc casual work. It sounds like a perfect job for someone recently retired.

My mums sheltered housing once said that they had a contact for someone who did this. From memory it was a reliable local taxi driver, but perhaps not. So if you had contacts with local care homes etc you might find someone that way.

The carer my parents have (she is self employed and only has 7 or so clients) will do this - obv there is an hourly cost plus petrol and parking.

Another alternative would be for your mum to give permission for the hospital to speak to you, and for you to negotiate with her doctors to send you a copy of the letter they send her GP after each visit. You could frame this as ensuring that she gives informed consent by having a written precis of the conversation.

She could then get to appointments with a volunteer car service. Dad uses his local one, and they push him to the clinic

Hospitals often have volunteer drivers- age UK or local church? Our local council have a useful phone line with details of carers etc who could help. It it really key to get support in place for the routine stuff- you need something in the tank for when things go a bit awry. Also it is good to get extra support accepted now.

It is standard practice these days for patients to get copies of their hospital letters (it's usually opt out not opt in). You could ask for copies to be sent to you (with her permission) or just look at her copies.

Free hospital transport to appointments can be arranged via the GP surgery by producing the appt letter.

You could then choose just to go to the important ones. If your sister makes a different choice I guess that is up to her if she has less time pressure.

I know it is thoroughly inconvenient but from the hospital POV it isn't possible for everyone who wants it to have the convenient appt times. Sometimes people do get called back to clinics just out of routine more than necessity or because the Dr thinks the patient wants it so you might suggest that she asks if all the follow up appts are necessary.

Thank you everyone for the replies.

The hospital does provide transport and will take her to the waiting room so that's ok.

the problem is more around getting information if mum attends alone. don't know if every consultant visit results in letter back to GP, Mum certainly doesn't get a letter so will ask about this.

I have suggested if its now appropriate for less frequent appointments, which they didn't seems keen on, but dont saywhy, makes me worry they think her current good (relatively speaking) health is balancing on a tiny ledge

The simplest solution would be to get her to sign a permission to share letter and copy that to her GP and each consultant that she sees.
Your mum is sent a letter following each consultation, a copy of which also goes to her GP.
You could ask that that letter is sent to you instead of her.
You can also request transport or arrange taxis to appointments.

My parents (in their many appointments/admissions) certainly don't always get a letter or any written information - it seems to depend on the team. So dads dermatologist copies him in, and writes stuff down in clinic for him (he has a rare autoimmune blistering condition), but the geratology team don't, and neither do the diabetic, memory clinic, orthopaedic, pain, or skin viability.

Sorry - x posted. Your mum should definitely be getting a letter following each appointment - this was brought in some years ago now to improve communication between hospitals and patients. Could she be throwing them away, or could they be going to the wrong address?

Either way - once her signed permission is on her records you should be able to get the letters sent to you.

You have to head the letter with her name, address, date of birth, hospital number and NHS number. then a simple statement:
I.........give permission for my medical history to be shared with ....... and wish correspondence to be sent to her at the following address........
..............can be contacted at the following telephone numbers........

Print, sign and date each copy and send to relevant parties. The consultant's name or GP's name should be clearly stated on each letter.
Photocopies are not acceptable.

I'm surprised that some places don't. I have to either supply the letter or justify why not.

Very definitely a letter will go to the GP after every time she sees a Dr (maybe not eg a CPN or DN visit but a clinic appt definitely) That I'm sure is absolutely standard and she can request these letters or copies to be sent to you.

The reason I'm sure there will be a Gp letter (apart from there always has been every place I've worked although not copied to patient in the bad old days) is that GPs (via the CCG) are basically paying for hospital appts so there needs to be a record to justify what was done and also GPs are ultimately responsible for their patient unless they are admitted to hospital so they have to be informed of what a specialist is doing.

We are in Scotland, maybe the letter thing to patient after every consultant is just in England? Need to check if GP gets one we can have a copy of.

Some GPs will charge you for a copy, so you will need to check. Some will send you a copy if you supply them with some stamped addressed envelopes.

Would it be possible to get your mum a large diary type book to bring to each appt and have a note printed and on neon paper on the front asking for an update and summary of appt inside - like a communication book from one person to another

just an idea

I think it is very unlikely that the doctor would have the time to write a summary in the book TBH.
I think sorting out the follow - up letters is the best way to go.
You have to get her permission to share information though before they will send the letters to anyone other than the patient.

yes i know what you mean frogs, the book system was what i used with my mother and her gp when i was caring for her, she got the independence of seeing gp herself, she had agreed in advance to share info but couldnt retain all to tell me so gp would bullet point it for me and also copy me into any letters etc as i was driving mum to appts ahd hospitals we would check her in with teh book let the staff ascertain her consent to write stuff down while i waited so she could discuss what she needed i would just get a summary

mine you she went to a small country practice so the gps had more time for people and appointsment generally didnt stick to time and took whatever was needed