Personal health information

[Velvetpaws75]

I am disabled and use a local voluntary car group to take me to hospital appointments. It is a great service in many ways and I have to pay just £16 to get to and from hospital for my fairly frequent trips ( about 25 miles total) as opposed to taxis which would cost me £100.
The service is provided by local volunteers all older people retired people.
My issue is with questions which are asked when I use the service. I feel that in being asked to be specific about which department I am attending is asking me to give fairly clear info on what my health problems are.
For example you only go to oncology if you have cancer.
I believe my personal information is my own and it is not necessary for volunteers to know this.
When booking a trip I obviously tell them which hospital, time and date. They then ask which department and when asked why they need to know this I am told it is so they can tell how long I will be there.
I have said that this is not indicative as appointments vary within departments from a simple consultant chat to an actual procedure so if they want an estimate of time then simply ask me that.
I am well placed to answer as I have been through this innumerable times over many years plus I am a retired nurse.
It has nothing to do with where they will need to park as the drop off points are the same wherever I am going within the hospital.
Then on a recent trip the volunteer asked me where in the hospital I was going whilst I was sat travelling in his car. I fended this off by saying the floor level but he was very persistent so I ended up
saying that I would not be telling him exactly which department I was attending because that was my private business at which point he apologised and said he was just asking in case I wanted him to come in with me. How in earth this information could have informed him if I wanted to be accompanied I have no idea.
I did my best to chat normally for the rest of the trip but felt quite uncomfortable that I had needed to say no to this mans questioning whilst sat in his car.
So I decided I would raise the matter with the group coordinator.
I was put through in the phone to the chairman after an initial refusal to give me an email or postal address because I would have preferred to write about this matter.
I made it very clear repeatedly how much I value the service and I appreciate the questions are well intentioned and that in no way am I making a complaint.
Despite this he was very angry that I should raise this matter, said that in three years nobody else has ever objected, that they knew better than me how to estimate appointment durations.
I said I could hear how angry he was and that had not been my intention and he then changed tone and laughed and said he was not angry.
He said if the service made me uncomfortable I was at liberty to stop using it.
His final word was that he would email all volunteers making it clear that I had requested they did not ask me the same question they ask everyone else.
I now feel very uncomfortable that volunteers who I value and in no way complained about as I said many times I appreciated the good intentions behind the questions are now being led to think I have moaned about their kind donations of their time.
I don’t think I can use this service again which was obviously this angry mans intention but at the same time £100 a time to attend my appointments is not affordable.
AIBU?

I assume these volunteers are making conversation and maybe most other service users are not bothered by the questions.

I imagine this chair got a bit defensive and as these people are volunteers I guess it's down to them how they conduct themselves. As he said you're not obliged to use it. So whilst I agree they shouldn't really be asking so many personal questions, there's not much you can do about it really.

I think you could have handled it a bit differently tbh and just said in response to the questions "I'm a bit uncomfortable discussing the details sorry". It sounds like when you declined to discuss before the person apologised and that was that
Not sure you needed to do much more. If they said they need to estimate appointment length then just volunteer that information up front so when booking say "I need to travel to xx hospital and my appointment will be 40 mins".

If I were you and you still want to use the service then call the chair back and say you've reflected overnight and you would prefer he didn't email them all. That you will just deal with any personal questions that come up and you appreciate them trying to estimate appointment length.

Alternatively discuss with your hospital your transport needs and see if they can help

YANBU - volunteers or not they should still have training in data privacy. Although I personally wouldn’t have a problem with those questions.

They shouldn't be asking if they don't need to know. Health information is personal and sensitive information, and you should only be required to share it if it is necessary for someone to know it. And no that doesn't mean that a volunteer making polite conversation can't ask casually about how you are or how your appointment went, and you can choose to or not to tell them. But they shouldn't be asking things like which department if it isn't necessary - as you say if the parking is all the same, and appointment times all vary.

If the wider charity wants to collect their own monitoring data for some reason, to see how their service is being used, then that would be different. But they should still explain that purpose to you when they ask for it. Needing to know the appointment is at X department because that helps them to estimate the appointment time? Doesn't sound like a valid reason. They could just as well as you to find out the estimated appointment time and to feed that back to them instead.

Could you perhaps get the driver’s phone number on another trip and say you will text or call them when you are ready to go home?

I always have the drivers number and made this point but the angry chairperson said phone reception could be poor. I said in that case ( never had it happen) I could ask nursing staff to call the driver but he just would not accept this.
I think that part of his attitude comes from the fact that they primarily take very elderly people as clients only and I am an exception in being much younger and willing to assert myself in any way.

Could you use patient transport, that's what I do. Then it's free.
They do ask you whats wrong with you when you first book the transport and they escort you to and from the department.

I have no issues with patient transport knowing which department I am going to as they are part of the NHS so know my health issues anyway.
The volunteer group is just that, I have no idea of their data protection etc.
I have used patient transport many times and been waiting up to five hours to be brought homes several times and as I struggle to sit then by this time I am in agony and can barely move.
Nurses have sometimes been able to offer me a hard examination couch to lie on instead if one is free but that is not much better for me.

If you want a taxi service pay for a taxi service. You can't be surprised when people who do something for free because they care do exactly that CARE.

can't say as a volunteer i'd be keen to take you again

Maybe it's because they sometimes wait for ages and ages and need to be able to go into the hospital and see what's happened. Some people must be admitted unexpectedly, and then be unable (or forget) to tell the driver.

I completely agree with you. It wouldn’t be hard for the organisation to remind their volunteers that health care is a private matter and it’s not appropriate to ask questions unless the client wants to share- and I’m sure many do.

If a male volunteer asked me about my gynaecological appointment I’d find that embarrassing. Who knows what the next question would be?

In future perhaps pre-empt the questions by saying something like, ‘ I hope you don’t mind but I hate discussing anything medical, I’ll make sure to meet you at x place at y time.’ You can, I’m sure still be pleasant and grateful while keeping firm.

Keep using the service.

@ladyofshertonabbas they only do planned trips booked weeks in advance

@Velvetpaws75 but it’s not unusual for a patient to go for an outpatients appointment, then be told they’re unwell and will have to be admitted there and then.

@Icedlatteplease if you read my post you will see I very much value the volunteers and was in no way complaining about them. It is an organisational issue.
Whilst the volunteers time is given free which is very kind the service itself is not free as mileage is paid as previously said at £16 per trip of 25 miles.
Having to go to hospital every three weeks there is no way I could afford taxis as I can no longer work.
After I had to retire from nursing I was a volunteer myself for five years for a charity and gave endless hours of my time before increasing disability stopped me.
Frankly with your attitude I wouldn’t want your help anyway

@ladyofshertonabbas that doesn’t apply to me at all. I cannot speak for everybody in every situation of course but as both a patient and a nurse I think that would be the exception rather than the rule

You come across as a bit entitled. These people are volunteers and doing this free of charge so, I would imagine, are kind people. Their comments are at worse maybe a bit thoughtless but I am sure they are just trying to make conversation or be helpful. If you don't like it then take a taxi or get a family member/friend to take you.

I understand where you are coming from 100%. Just because someone is a volunteer doesn't mean they don't get to be held to the same level of data protection as employed staff. They would need to be DBS checked, have done safeguarding training etc. You don't get away with not doing these things because you "care".

I also 100% understand why you use this service over patient transport which is hideous - especially if you have regular appointments.

the chairman dealt with it incredibly unprofessionally. To threaten to email all volunteers to highlight not to ask you about it is wrong. Their staff don't need to know the exact department you're being seen at, as Dr X will have different waiting times to Dr Y, and each department will have multiple clinics for different things. Your driver can't possibly have ANY idea of waiting times, that's impossible.

And the clinic you're going to is not their business full stop. If you want to share, you can. But putting you on the spot can make you feel awkward. I had to have vaginoplasty a few years back, basically as a result of birth injuries (long story), and was under the same clinic and doctor who does male to female sex change surgery. I would have felt extremely uncomfortable being questioned - if I said the clinic name you can bet 100% I would be judged as either having a sex change or having surgery for a designer vagina! I wouldn't want to discuss this with anyone outside my close friendship group.

I would email the chairman, ask that you he doesn't email all the volunteers as this would put you in an extremely uncomfortable position which is what you were simply trying to avoid, but that you are concerned that patients will be left feeling upset when questioned about what they are attending the hospital for.

The volunteer patient transport organisation that serves our cluster of villages have more demands for lifts than they have volunteer drivers to accommodate.

So they ask patients what they are going for because they give certain types of appointments priority over others. So say, an appointment for chemo takes priority over an appointment for physio. Or an urgent surgery over an outpatient follow up.

They need to know which clinic too so they can time appointments so the volunteer can help as many patients as possible on a driving shift.

Its sad but I suspect they are not the only group of volunteers having to juggle more demand than they have volunteers to support.

Your driver can't possibly have ANY idea of waiting times, that's impossible.

It’s not impossible, most of the volunteers are retired and in a week they will take maybe a half dozen to the same clinic in the same hospital so they get a corporate knowledge of busy/quiet times and usual wait time.

This. The main benefit is for you, not them. I would be angry too at the pettiness of your complaint. Couldn't you have just made something up if you didn't want to say? It's hardly private if you are going to a department, they don't expect to know what for.
For the sake of such a big saving I think you were out of order making such a complaint and you also were very rude to that volunteer.

Whilst the volunteers time is given free which is very kind the service itself is not free as mileage is paid as previously said at £16 per trip of 25 miles.

Thats just to reimburse them the cost of petrol and parking.

I work in the voluntary sector and even organisations run mostly by volunteers may be receiving some sort of public funding in which case they might be trying to get information via volunteers to help prove their worth i.e. "these are the types of places/appointments we're supporting people to attend and this is why our service is so important". The fact that they ask this every time you make the booking makes me think this could be part of it. If it is the case, they should be more open about it but a lot of organisations can be be really clumsy about how they go about it, especially smaller ones who aren't skilled at gathering data.

Whatever the reason, they obviously have some sort of process where they consider it to be useful information. Right or wrong, it's unlikely they'll change that process when the vase majority of clients are fine with it. I would be, so I'm inclined to say you're being a bit over sensitive.

I do get the sense you're trying to be appreciate of their work when having your voice heard which any service should be responsive to. The chairman didn't handle that well. Just because one person objects to something everyone else goes along with, doesn't mean it can't be answered with respect - unless you're not speaking to them as politely as you're making out.

@happsy in no way was I rude at all. He was a nice chap and I fully understood that he meant well as previously said.
I was backed into saying that I would not answer his repeated question and why. I made it clear to him that I thanked him for his offer to accompany me into the hospital.
How on earth is that rude?
We parted having chatted throughout the rest of the trip
there and back on good terms.
I don’t know how many more times I can repeat that I am not complaining about volunteers asking me this. It is the organisations policy to get them to ask this.

don’t know how many more times I can repeat that I am not complaining about volunteers asking me this. It is the organisations policy to get them to ask this.

So what are your complaining about then?

I don’t know how many more times I can repeat that I am not complaining about volunteers asking me this. It is the organisations policy to get them to ask this.

I did gather that as you’ve explained it very well. I just do not agree with you that the organisation should change its policy to not ask anyone at all because you, one person, are uncomfortable. I think the chairman made the right response of ok, I will let everyone know to not ask you, so you can be comfortable. He may not have had the best tone in telling you this.

The information is often necessary for prioritising requests of lifts when you don’t have enough drivers for everyone, for planning driver shifts so they can take as many patients as possible, and as a pp said advocating for public grants to fund the service.

@divinededacende I can say without doubt that I was entirely polite and that I started the conversation by saying how much I appreciate the service and that I was in no way making a complaint.
I was just asking about an issue which was making me uncomfortable.
He was very angry from the word go.
As an ex volunteer myself I know that the person in charge is entirely variable and some groups are regulated and/ or given training on appropriate matters and some are not.
I am not sure who if anyone regulates this group.
There is no information or any email contact or address on their website.
The admin person seemed scared to give me an address to write to or even tell me the name of the coordinator but then told me the chairman would be in later. She was even hesitant to tell me his first name.
So thats how I ended up speaking to him.