A rather lengthy question

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Hi there,

Sorry in advance as I expect this post will get rather long. And apologies if it's in the wrong section!

As a quick introduction I'm currently attending Ravensoburne University in London. At the beginning of this week I started of a self-directed brief looking into medical options available to people who would have trouble finding out about or accessing medical services.

To that end I’ve put together a list of questions below and would be hugely, immensely, ridiculously grateful to anyone who could answer any or all of them.

I realise the situation of each carer can differ significantly and not every question posed will be relevant, and to that end comments or critiques of the questions are also very welcome.

Questions below and thanks again for any help, and of course the wonderful services so many of you here provide.

Questions:

How often does the person you care for see a doctor?

How often would they like to see a doctor?

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

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

How willing would you say the person you care for are to seek medical assistance?

If visiting a doctor, how do they get there?

How long does it take them?

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)?

How do they get in contact with doctors when needed?

If needed it, who picks up their prescriptions?

Who do they contact initially for medical help?

Have they ever used any specialist medical services - panic alarms, NHS direct etc?

How do they find appoint times, waiting times etc?

Do you think they would feel comfortable about self-diagnosing, say through the booklets, the internet or other means?


Thank you again for any input,
Oliver
How often does the person you care for see a doctor? - once every few months

How often would they like to see a doctor? - Not very much

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? - pretty good for us

How willing would you say the person you care for are to seek medical assistance? - I do it

If visiting a doctor, how do they get there? - Doctor comes here

How long does it take them? - As above

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)? - No

How do they get in contact with doctors when needed? - I do it

If needed it, who picks up their prescriptions? - Me

Who do they contact initially for medical help? - me

Have they ever used any specialist medical services - panic alarms, NHS direct etc? - Environmental control system

How do they find appoint times, waiting times etc? - ok because I am there

Do you think they would feel comfortable about self-diagnosing, say through the booklets, the internet or other means?
No
Hi D0r0thyG,

Thank you! If it's not too personal a question, can I ask how heavily the person you care for relies on you and get an idea of their age?

Kind regards,
Oliver
60 years of age. Relies on me for everything. Thanks Oliver.
How often does the person you care for see a doctor? - neurologist once a year, gp whenever needed

How often would they like to see a doctor? - Not very much

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? - pretty good for us

How willing would you say the person you care for are to seek medical assistance? - I do it

If visiting a doctor, how do they get there? - Doctor comes here most of the time

How long does it take them? - I take him by car, or if it's nice, push him.

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)? - No, it's confusing to him and the buttons are all too small, so if he makes a mistake he can't correct it.

How do they get in contact with doctors when needed? - I do it

If needed it, who picks up their prescriptions? - Me

Who do they contact initially for medical help? - me

Have they ever used any specialist medical services - panic alarms, NHS direct etc? - Environmental control system

How do they find appoint times, waiting times etc? - ok because I am there

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


Caree is 60 and completely dependent.
How often does the person you care for see a doctor?
Approximately 3 times a year

How often would they like to see a doctor?
They would like to be well enough to never see a doctor.

Do you feel you get they required level of medical care?
No. Home visits are not available (except through the out of hours service), and my caree often has to wait until he is well enough before he is well enough to physically get to and from the surgery!

What's your opinion of the state of medical care in the UK?
Pretty good, on the whole.

How willing would you say the person you care for are to seek medical assistance? Willing enough when he thinks it is needed, but that's after ruling out anything which'd go away in it's own time, calling NHS direct and using over the counter stuff (and/or home remedies) where appropriate.

If visiting a doctor, how do they get there?
Walk, s-l-o-w-l-y and accompanied - steps outside the flat preclude the use of a wheelchair or mobility scooter - as does the steeply sloping drive of the surgery!

How long does it take them?
45-60 mins (the distance can be walked by a healthy non-disabled person in 20 mins), when he's mobile enough to walk that far (not often)

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)?
Comfortable, yes; able to use it without difficulty or confusion, no (particularly when fatigued, unwell, or with more hearing impairment than usual).

How do they get in contact with doctors when needed?
Phone for an appointment on the day

If needed it, who picks up their prescriptions?
Me (his carer).

Who do they contact initially for medical help?
NHS direct.

Have they ever used any specialist medical services - panic alarms, NHS direct etc? Yes.

How do they find appoint times, waiting times etc?
Not bad at the GP surgery, but hospital outpatient appointments and the amount of time you're kept waiting once there are not sympathetic to people with variable conditions (who can't predict 2 days, let alone 4 weeks in advance whether they'll be well enough to keep the appointment or not). Nor IME are waiting rooms appropriate for people who find noise (even at fairly low levels) and using seating without arms, and sometimes also without backs, or set at an uncomfortable height (instead of being able to lie down) painful and exhausting. Before now, I have arrived at the waiting room (accompanying my caree) with earplugs, sunglasses, medication, water, snacks (some of the tablets must be taken with food), a karrimat, a folding stool, a fleece blanket, and reading material!

Do you think they would feel comfortable about self-diagnosing, say through the booklets, the internet or other means? He doesn't feel comfortable with it - that's the whole reason for using NHS direct and his GP!

To give you an idea of my caree's level mobility etc, he get the highest care and mobility components of level of DLA + IB, has been long term sick & disabled since his late 20s, and is in his mid 40s now.
Hi Myrtle and Catja,

Thank you both for your replies, and thanks D0r0thyG for the added info.

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?

And to Catja - firstly thank you for the detailed responses. It's interesting to see the little things that can be overlooked, like the steep slope to the surgery or the care available to people waiting to be seen in a hospital. If you have any other observations or suggestions for improvements based on your experiences that would be great.

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?

Kind regards,
Oliver
As I have two people of different generations to care for, I'll do them one at a time -


How often does the person you care for see a doctor?
Not very often - around three times a year

How often would they like to see a doctor?
Never! She doesn't like to visit doctors!

Do you feel you get they required level of medical care?
She gets a high level of day to day care with a specific problem, but generally I think that she gets overlooked.

What's your opinion of the state of medical care in the UK?
From what I can understand, it differs in different parts of the country. Where I am, I believe it isn't too bad.

How willing would you say the person you care for are to seek medical assistance?
She leaves all that to me or my partner

If visiting a doctor, how do they get there?
Car - I would take her

How long does it take them?
Takes her half an hour to get ready - 10mins to get into the car and abour 10min drive. Another 10mins to get out of the car!

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)?
No - doesn't understand any of it!

How do they get in contact with doctors when needed?
Through me - I phone the doctors

If needed it, who picks up their prescriptions?
They are delivered to our door, then we take them over

Who do they contact initially for medical help?
A district nurse visits twice daily, so would ask them first

Have they ever used any specialist medical services - panic alarms, NHS direct etc?
She has a lifeline pendant, podiatry, eye clinic

How do they find appoint times, waiting times etc?
Usually appointments are running late so waiting times can be long (applies to eye clinic)

Do you think they would feel comfortable about self-diagnosing, say through the booklets, the internet or other means?
No, not at all

This is my elderly mother, who lives independently still, but relies on us for all her day to day living. she is 89


Second person :-


How often does the person you care for see a doctor?
Mostly every week and sometimes in the week

How often would they like to see a doctor?
Sees one regularly, so is happy with that, I think

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?
answer same as other one

How willing would you say the person you care for are to seek medical assistance?
Willing, but not very able - not confident in it

If visiting a doctor, how do they get there?
I would accomany him

How long does it take them?
10min car ride

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)?
Yes

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

If needed it, who picks up their prescriptions?
I would take him to pick it up

Who do they contact initially for medical help?
Would ask my advice

Have they ever used any specialist medical services - panic alarms, NHS direct etc?
He is presently in psychiatric ward in hospital

How do they find appoint times, waiting times etc?
Always late, in hospital, or doctors don't turn up on the allocated day!

Do you think they would feel comfortable about self-diagnosing, say through the booklets, the internet or other means?
I'm not sure - I think that he would investigate these resources, but whether he would use them, don't know.

This is my son, 28yrs old.
Oliver,

Your interest seems to be with regard to technology. The question you might have asked is "if ______ technology was available, would you (?) or your caree (?) use it." If not, why?

My caree is a retired network engineer and is very with it when it comes electronics and technology of any kind. However, his health is so poor that even though he understands how to use technology, he cannot do it physically. So it's really not relevant how long waiting times are or if a technology was available that could eliminate the need to go to a clinic, etc. (And doctors and other medical professionals always come to our home.)
How often does the person you care for see a doctor?
Doctor - every 2 weeks
Neurologist - 3 times a year
ESN (Epilepsy specialist nurse) - monthly

How often would they like to see a doctor?
Probably less than now!

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?
Neurological services are patchy - we're coastal Scotland - neuro's come down from Glasgow 1 day a week.

How willing would you say the person you care for are to seek medical assistance?
When it's needed I call - he's out of it.

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

How long does it take them?
GP - 15 mins
Neuro - 1 hour

Would you say they are generally comfortable with using most technology (computers, the internet, mobiles etc)?
Yes - was a programmer in a past life

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

If needed it, who picks up their prescriptions?
Done together

Who do they contact initially for medical help?
GP or NHS Direct

Have they ever used any specialist medical services - panic alarms, NHS direct etc?
Yes, regularly! We use telecare wander & seizure alarms & need NHS Direct input.

How do they find appoint times, waiting times etc?
GP - fine
Neuro - lengthy wait.

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

marie x