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?

OP, YANBU.

Some of these responses are awful. It’s perfectly reasonable to ask the organisation to consider how they can do things better if their policy means requesting unnecessary personal information. The attitude that disabled people should be grateful for any little help they get and never ask for more is disgusting.

It is sad that several people seem to think that if you are getting help then you have to be grateful to the degree that accepting a policy that makes you uncomfortable and having to listen to a very angry man belittling your feelings and speaking to you the way I was spoken to is something that is a reasonable trade off.
When you are disabled you start at a disadvantage and to me this is all part of the unlevel playing field.
When I was a nurse I went out of my way to ensure peoples dignity and feelings were respected and listened too, whether I personally agreed with them or not. This is so important when you are in a position of power relative to the other person.
This man controls access to a service I need to use because of my disability.
Yes I can use patient transport but as explained the demands on that service mean waiting times are very, very long.
Yes I can use a taxi but the costs cannot be met on my nurses pension and PIP when I already have care needs to pay for.

GP receptionists ask everyone calling what their specific health issue or symptoms are so they can triage who sees a GP that day and who doesn’t.

The patient transport is asking you for far less personal information(which hospital clinic) than what your GP receptionist would ask you but it is no less important to the running of the patient transport organisation.

I don’t think it’s an issue of being treated poorly due to your disability, or the expectation of lump anything because you should be grateful, I think you look down on them because they are “only volunteers”.

And you’ve been exempted from the policy you are complaining about! No one is saying you shouldn’t have asked, most of us are saying you are unreasonable to expect them to also change their policy for everyone else as well as for you.

I think you are getting a hard time here from some people @Velvetpaws75

It seems the Chairperson was very defensive at any perceived slight against the service. There really should be training for all volunteers in a service like this on GDPR, they should understand the rights people have to privacy.

@Velvetpaws75 i'm an ex -HCP myself and also chronically ill so i understand your points fully about privacy etc. It is very disappointing that the chair reacted as he did as any volunteer organisation should to be open to hear users views. However, as someone who used to train the volunteer drivers that we used in our hospice service, sometimes it is important to understand that volunteers sit between 2 worlds....our volunteers were trained in confidentiality, the same as employed staff. We had to train our drivers to cope with potential vomit, incontinence, falls amongst other things and frankly we were hugely grateful for anyone willing to give their time. Sometimes we do have to make their lives easier and if there is a good reason why they ask this then fair enough...if there isn't a good reason than equally you have every right to complain or decline to give the info.

I think there is some confusion here.

There is a difference between the car service asking which clinic you are attending, so they can schedule the drivers, is one thing - though even then, it won't help them much so I would question why they need that. The driver, however, asking is not appropriate. They do not have inside information on clinic waiting times so it won't be any help to know the clinic. They need to know which entrance, and what time you're expected back.

@IslaWinds you are the only person who has used that phrase so why are you using quotation marks as if you are quoting me?
As said I have been a volunteer myself
I would never look down on anyone let alone someone kind enough to give their time
I had said that from personal experience I know that training and support for voluntary organisations is variable, thats all

@justteanbiscuits not all services are the same. as with anything volunteer wise there are many forms of services across the country- some offer a door step to waiting room service.

The OP had already said that this wasn't provided.

I am honestly not sure if people are wilfully not understanding or just not reading.
I have no objection to NHS staff knowing my health info so gp reception staff are covered by this.
Where have I said I expect policy change purely because of me?
What I did expect was to be listened to courteously and have a balanced conversation about my concern. This is not what happened.
I give up.
Clearly I must be more humble in future being as I am burden on society that all us disabled people are. I will sob quietly in my darkened room and be grateful that anybody deigns to notice me at all and not feel I have any right to privacy or respect.

Sorry I meant to italicise that not put in quotation marks.

I have no objection to NHS staff knowing my health info

Patient transport is within the NHS, and these volunteer patient transport groups are filling in where the NHS is failing because they care about people like you who are in need. I’d recommend you look at volunteer patient transport as the same as NHS patient transport, because it seems to me you’d share the info if they were not volunteers.

@justteanbiscuits it says this in the OP when she asked the volunteer why he needed to know!!! ""he apologised and said he was just asking in case I wanted him to come in with me""

Which does happen btw. There are patients with cognitive issues or anxiety or mobility issues that would need a driver to go in with them and get them to the correct reception and waiting room within a hospital.

Then you say "do you need me to come with you to the clinic" or "do you need help getting to the clinic".

Even in the NHS, the individual drivers wouldn't need to know the individual clinic (they just drop / collect to / from the transport lounge most of the time).

And yes, I do volunteer. And I know I am held to the same standards as any employee doing similar.

Omg.

Urghhhhh, I know you know that your health condition is strictly private and confidential.

The attitude of the person you brought your data protection complaint up with is atrocious.

I suggest you contact your local authority and contact your local councillor as action needs to be taken against the volunteers for violating the gdpr legislation as well as their idiot...chairman who chose to patronise you when you raised the issue with them.

Just tell your councillor what you said in your post OP as they can support you with this.

As an example taxi drivers where I live are expected to keep their mouths shut and not divulge any passengers' personal info to others as they too are bound by the data protection laws which have become even stricter recently. I see no reason why the same should not be expected of volunteers.

I'm guessing one reason for knowing the department is to help prioritise appointments if there is a shortage of volunteers. So they know Bob only drives on a Tuesday but someone has rung for an urgent breast clinic appointment on a Monday and they know Bob would do it as a one off but not for a physio appointment for example.

Another might be because some of the others using the service might need/want directions to the right department, or someone to hold onto while walking up a long sloping corridor, or even to go in a wheeled chair - particularly if eyesight is bad and reading signs is difficult.

However, I do think the chairman handled it badly. Maybe ring back and say you were being sensitive as you've always had patient confidentiality in mind because of your occupation and thank him for doing a great job. Not that I think it necessary, but it could help clear the air and mean you could continue using the service. Sometimes a conversation to make it look like you're apologising can smooth things over.

There are two different issues here though.

If the organisation believes they need to know the department she is attending - and when pressed on why they've said it's to work out appointment times - then that is one thing. And if she can explain the appointment times without mentioning the department, why should she have to say the department as well. She shouldn't have to share any medical information that isn't necessary.

The volunteer in the car asking which department she's going to on the off-chance she wanted him to go with her - absolutely no justification there! It wasn't casual small talk "I fended this off by saying the floor level but he was very persistent". Volunteers should still be made aware that they shouldn't press people for information about their medical conditions unless they need to know to safeguard that person or some other necessary reason.

On balance, I think just saying ‘I’m going to be attending an appointment in X department’ is actually OK when asked. I understand you are not happy about it, but it really doesn’t give them much information other than possibly being able to contact X department if you didn’t come out within an agreed time frame. If they then asked what you were going to have done/requested details of procedures, that would probably go from reasonable information to just being nosey, which is not OK.

Also what is not OK is the reaction of the Chair. Regardless if this is a volunteer service or not, and even whether you are unreasonable or not, he behaved unprofessionally. You were not complaining (and you are entitled to do so), and stressed how valuable the service was and how much you appreciated the volunteers, but wished them to cease asking this particular question, so he should have listened and not dismissed your feelings. He does not get to dictate your discomfort because it is a ‘free’ service.

Sadly I’m not sure there is anything you can do as it is unlikely they are regulated in any way.

I’d continue to use the service (if they let you), and whilst I know you don’t want to, when you get in the car, lightly say you are going to X department within the hospital as I believe you are required to ask, but I would appreciate it if we did not discuss that any further as we drive - happy to chat about other topics.

Ok, well first of all, I don't think action needs to be taken against the volunteers. My god, the voluntary sector already struggles to attract and keep volunteers as it is and with budgets being cut to the bone, it's only going to get worse.

You are absolutely allowed to ask for information, even sensitive information if you have a purpose for doing it and you treat it appropriately. They obviously think they do. That might be flawed but the fault is with the organisation. They ask the same information when taking a booking so there's obviously some process they think benefits from this information. They definitely need to be more consistent with their volunteer training so the volunteers know what they should/shouldn't be asking and why.

The chairman's attitude is the biggest problem. He should be able to articulate why they take that information and what they do with it without being rude or defensive but one rude interaction isn't enough to push the nuclear button.

A lot of small organisations are doing the best they can under a lot of pressure because statutory services are shrinking and leaving huge gaps to fill. I don't think they should be completely let off with bad practice but a bit of flexibility is needed.

If you really want to take action, ask for their privacy notice, you could even ask for a subject access request too. It should lay out what data they capture, why and what they do with it. If you're not happy with the contents or they refuse to give it to you, you could access the organisations information through the Charity Commission and write something to the board who should be identified there.

I wouldn't start making waves elsewhere until I'd done this, at least.

By the way, I'm not even suggesting OP is even bothered enough to go this far. I just think it's a better route than is being suggested here. At the very least, I'd use the information from the Charity Commission to address a complaint about the chairman's conduct to the wider board.

Op, this is a voluntary service where you are paying a very discounted rate for your benefit. You have the choice to pay for it yourself at 100 but yet you would rather complain about such a petty issue. These people are retired and kindly volunteering their time, what do you think they are going to do with your information?? So what if it's fell them what department it's for, you're not discussing the issue. The guy was probably just making conversation with you and you took it all the way to make a complaint. Think about it- these are people spending their time kindly doing a very good service to others.!

OP I'm sorry you feel the thread is a pile on. I guess you asked if YABU and people have given their views. Some are supporting you and others disagree. That's the way of a MN thread.
I don't think the chair handled it well at all, it seems like it's a bit of an amateurish outfit given their reluctance to give details etc. But it's a service that clearly some people are happy with and it's volunteers so I think you can expect that sometimes it's not as slick or professional as a an official service. I am honestly sure this driver was just making conversation and most people would have been happy to share.

So YANBU to expect people would not pry into your private medical history.
YANBU to expect the chair to be reasonable and listen to your complaint.

But ultimately I'm not sure what you want as the outcome ? They've said they will email everyone to tell them not to ask. That is what you wanted ? To not have people ask?
A PP pointed out some reasons the phone people may want to know info eg chemo vs physio for prioritisation purposes, so there may be some rationale for what they are doing. They are not doing it very professionally for sure but it's a small volunteer service. So really it doesn't matter if YANBU or YABU, it's done now and you have to decide if you want to still use it and accept some of the shortcomings of the chair etc

You are in no way being unreasonable. I wouldn't want to tell someone my department either, and they don't have a way of knowing how long you'll be.

If they want that information to collect data then (legally) they need to explain that to you. I can understand the need to prioritise the service, but this should be made clear to users and clearly this isn't the case if you're not required to say when booking.

The chair is a bully. It's also worrying that you can't get contact details. Have you checked the charity commission register? I agree with you, there are likely other users who don't want to say but don't want to lose the service.

Just because someone gives their time for free, or you receive something discounted means you should accept being intimidated and embarrassed. This is not how volunteer run services should work. Everyone saying to suck it up has something of the Victorian workhouse ethos.

I think you’ve over estimated how interested in the answer or you personally the driver is