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A rather lengthy question - Page 2 - Carers UK Forum

A rather lengthy question

Take part in research or give your opinion in a survey.
How often do they visit a doctor?
Every couple of months

How often would they like to see a doctor?
Once a year for check up

Do you feel you get the required level of medical care?
From the spinal unit - yes
From the GPs - yes

State of medical care in the UK?
Generally good

Willing to seek medical assistance?
Yes, but plays everything down.

How do they get to the doctor's?
Car

How long does it take them?
Spinal Unit - 1 hour
GP surgery - 15 minutes

Comfortable with technology?
Yes

Contact with doctors when needed?
Phone

Who collects prescriptions?
Me (wife/carer)

Who do they contact initially?
GP/Spinal Unit/Shropdoc if out of hours

Specialist medical services?
Shropdoc/NHS direct/Spinal Unit

Appointment times/waiting times?
GP - usually fine
Spinal unit - usually very good, depends. Immediate attention if needed. Routine scans take months to get an appointment, even if asked for by Consultant/Surgeon

Self-diagnosing?
Quite capable of this after 16 years being tetraplegic
Can I also ask if you know what areas or why the person you care for has difficulty in relation to computers, phones etc and your opinion of NHS Direct as a service?
Use of a telephone is made difficult, tiring and confusing by almost complete hearing loss in one ear (unsuitable for hearing aid) and tinnitus in both ears. Tinnitus becomes worse when tired, when you hear certain sounds, when stressed or more unwell than usual (particularly if the temperature becomes raised). Try holding a conversation while 30 triangle players (each one a different pitch) have a free jazz jam session (no rythm, no predictable tuneline) behind your chair and you'll get the general idea.

In addition, both the use of a phone and the use of computer are made difficult because of M.E. Symptoms include fatigue, cognitive difficulties (including limited short term memory, intermittent aphasia and dyslexia) and confusion. If you imagine answering a mental arithmatic test given without warning over the phone in the small hours while you're badly hungover and feeling fluey, that's close to how much hard work it is to think straight with M.E. Computer use is possible, but it's difficult and very tiring even when not more unwell than usual.

Add in an illness, sleep disturbance, or more pain than usual and you've got somebody who is sane and lucid but barely able to communicate.
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NHS direct has been a bit of a mixed bag. On one side a lot of the home care information has really told me nothing I hadn't already worked out for myself. I've previously held an adult Red Cross 1st aid certificate -the one which insures you to do first aid in the workplace - and have plenty of experience of managing & treating common illnesses & ailments at home.

On the other hand, the one time I rang them after my caree had been ill for a week (with something which hadn't gone away or improved, and he wasn't able to walk even a short distance without risk of falling, let alone as far as a mincab or the GP's surgery) they took me through a list of maddeningly obvious questions which I'd already ruled out (eg. meningitis rash) then they said they didn't know what exactly what was wrong and would get somebody more senior to call back. That call back asked a lot of questions again (some different from the first lot), then said they'd pass it onto the out of hours service for a home visit which would definitely come that day (this was on Sunday morning). The out of hours doctor arrived within a couple of hours, took a very thorough history (listening to me as well as my caree), diagnosed a couple of overlapping ailments (vomiting as part of a migraine attack had disturbed the ear's balance mechanism, and until that was damped down it was going to keep causing dizziness, an abnormally sensitive gag reflex, more vomiting, and a burnt gullet) , and left a prescription + advice on what else could be done, saying that the information would be passed back to my caree's usual GP.

The prescribed stuff plus the advice worked - not sure how much got back to the GP within the fortnight though. It's a multi-handed practice and they try to read each other's notes but don't always have time to do so.
Myrtle, can I ask if you think the person you care for would be open to using the kinds of technology mentioned if presented in a way that was less confusing or prone to error? Also, do you think there are any other reasons such devices are difficult to use outside of small buttons?
He has advanced primary progressive ms, his concentration span is short, he gets fatigued very easily and his hands are beginning to 'claw', making manipulation difficult.
Hi all,

Sorry I haven't responded in a couple days, BT seem to have a grudge against my internet connection.

Firstly thanks for the fantastic responses so far - I've got a few follow-up questions for you all if that's OK, and I'm also going post again in a minute with some separate thoughts/questions.

Oh, and just before I begin, I usually end up focusing the negative things, it's the nature of my current brief, but from speaking with many people they in large part have a very positive view of medical care in the UK. On to the questions...

Caring_Mind - You said your mother is often overlooked - can I ask for more detail or to what extent? Also, you mention doctors not turning up on the allocated day for your son, is this a common issue?

Stacy - Thanks for your comment, I think you're right, my question was limiting (as were several others). I'll go into that more in my next post.

marie66 - You mention neurological services are patchy due to living on the coast, does that make any other medical treatment more difficult or is it just the specialist stuff?

frandrake - Has your caree playing down a medical issue ever been a big problem? And thanks for mentioning Shropdoc. I looked into the services they offer, it's really great, how have you found their services to be?

Catja - Thanks again for such a detailed responses, they've been a tremendous help and you've really helped to illustrate some of the issues you or your caree have faced. As I mentioned above, I'm going to post again in a short while with some more questions/thoughts. I'm not sure how much of it will be applicable to you, but I'd love to hear any thoughts you have.

Thanks to everyone,
Oliver
Hey to everyone again,

From going over all your replies I think in retrospect my questions were in places too broad. Your answers been hugely helpful, but it's been very interesting hearing people's stories or opinions on specific issues they've faced.

As I mentioned before, from speaking to people both on and offline it seems that the general opinion is the state of medical care in the UK is very high and the range of different types of medical care that is available very comprehensive.

However, some areas that people have mentioned as being overlooked (predominantly when people don't have careers) is the lack of support regarding day-to-day well being, both physically and mentally.

I'm still in unsure where the NHS' responsibility ends in regards to quality of life issues, but as an example a friend of my grandmother had one on going medical complaint, the possibility of needing a pacemaker and trouble walking, however one of her main complaints was only getting a few hours sleep a night due to a bad back - a proper mattress and installing handrails etc were of a huge amount of help to her. It was interesting to see this kind of advice wasn't more prominently pointed out to her or that more help wasn't given to install them.

The second issue is day-to-day metal wellbeing, which seems overlooked, but again it would be fantastic to hear people's opinions on this.

Finally, as perhaps this relates to my previous point, but loneliness also seems to be an issue, especially among those without careers. This is often not to an extreme degree, but quite a few people have mentioned that having few if anyone to speak to can be incredibly disheartening.

I'd love to hear any thoughts/suggestions on the topics I mentioned, or any other areas you think are relevant.

Kind regards,
Oliver
How often does the person you care for see a doctor?
- every 2-3 months for psychiatrist & GP is as needed base

How often would they like to see a doctor?
- when the situation is very difficult we wish to see a doctor immediately but it is not possible...

Do you feel you get they required level of medical care?
- YES.

What's your opinion of the state of medical care in the UK?
- not very good but it is depending on the areas of medical care. It is often too slow to get a right treatment and it is not recovery focused.

How willing would you say the person you care for are to seek medical assistance?
- it was very difficult at the begining of the current breakdown as he was so refusal. It seems ok lately but he requires a lot of reassurance whatever he does.

If visiting a doctor, how do they get there?
- by bus with me as wehad to give up on keeping a car.

How long does it take them?
- bus takes about 20-30 mintes, but getting out of home is hardest one. It can take hours so when he has an appointment, we do not make any other arrangement on the same day.

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)?
- YES. They are a part of personal intersts but also, can trigger panic episode.

How do they get in contact with doctors when needed?
- by telephone normally.

If needed it, who picks up their prescriptions?
- it is my job.

Who do they contact initially for medical help?
- normally me.

Have they ever used any specialist medical services - panic alarms, NHS direct etc?
- YES. But not for the current/on going problems.

How do they find appoint times, waiting times etc?
- it is depending on the atmosphere of reception area. It is often very hard to ask him to wait.

Do you think they would feel comfortable about self-diagnosing, say through the booklets, the internet or other means?
- that is what he did as he was not diagnosed for a long time. But it can be dangerous.
Hi Oliver, it's the specialist treatments, most are ok but there is a shortage of neuro's and the ones there are all want to work in the big cities.
The agreement here is for the Glasgow specialists to come down to Ayrshire and Arran 1 day a week.
They have tried to combat this with ESN's (Epilepsy Specialist Nurses).

Waiting times for specialist neurology appointments are dire - we waited from Dec - March 07 for a neuro appointment.
4 months with 30 seizures a day - it's a long time to cope.
It was a very difficult time for us both - we felt the NHS had abandoned us.
Things only improved when I lost patience and contacted the scottish health minister's office and politely started making a fuss. Image
- I threatened them with the press and it worked!

The only other issue I had, was having to go stay in the General Hospital throughout my husbands time there as in their words " we can't cope with him".
Yet again a difficult time. Image

marie x
How often does the person you care for see a doctor? every month

How often would they like to see a doctor? every few months

Do you feel you get they required level of medical care? yes

What's your opinion of the state of medical care in the UK? good

How willing would you say the person you care for are to seek medical assistance? not very willing

If visiting a doctor, how do they get there? car

How long does it take them? 10 minutes

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)? not at all

How do they get in contact with doctors when needed? phone

If needed it, who picks up their prescriptions? family member

Who do they contact initially for medical help? family member

Have they ever used any specialist medical services - panic alarms, NHS direct etc? yes-flood detector and wandere alarm

How do they find appoint times, waiting times etc? not too bad

Do you think they would feel comfortable about self-diagnosing, say through the booklets, the internet or other means?
no