Midnight meanderings ☺️ - care options and medical confidentiality

[Jackson]

I was talking to various friends in all sorts of different living situations yesterday and I’ve come to the conclusion that the advice to be in a bubble if you live alone and are fed up of your own company during the seemingly neverending crisis that we all find ourselves in is all very well, but it’s just not that simple. There are people who live with others and who are still very lonely and in reality, even for those who qualify for ‘bubbling’, finding a household to partner up with can be quite tricky.

Not many people seem to raise this issue even though it is very real and I have to wonder if this is related to the stigma attached to living alone or admitting to feeling lonely. Of course in spite of the many stereotypes and assumptions that exist within society, being lonely and living alone are different things. They may not be mutually exclusive but living alone does not automatically mean that one is lonely while it is possible to have constant company but exist in a constant state of loneliness - - oh dear, I am now meandering way off-track .

As a single person living alone with Parkinson’s disease, I totally understand that I’m hardly an attractive proposition in terms of ‘bubbling’ and while I have some very good friends, most are already in a bubble crisis caused by trying to choose between an older child who no longer lives at home and at least one parent who lives alone. To be honest, I am actually fine as I am but I know people who are not however being seen as potentially ‘needy’ in any way can make people wary of getting too involved for fear of being seen as future carers.

Personally, I do not want any of my friends, or family members, to feel obliged to provide any level of support for me that goes beyond friendship but my battle to be seen as an individual living with Parkinson’s as I am (in the here and now) rather than being defined by the worst case Parkinson’s scenario that may be my experience at some point in the future - and who really knows what the future holds for anybody in terms of health status - has not been helped by the recent marketing campaign. Without any explanation or follow-up to the advert, some acquaintances have internalised some very strange messages as to what my symptoms actually are and what my disease progression is going to be. Suffice to say that I have finally managed to convince one that I am currently totally capable of driving - though I strongly suspect I am now off the list of people who can be called on for emergency childcare - and have just about recovered from another crying down the phone at me for a very long time.

On the plus side, my car broke down a couple of weeks or so ago and when I called them, roadside rescue services asked me if I had any medical conditions so I answered honestly. I’ve never had a bad experience with roadside rescue services but the speed with which somebody got to me on this particular day was startling; maybe they’d seen the advert too .

Anyway, I am not going to go on about PUK’s current campaign; I can rationalise the thinking behind it and I can also just choose not to see it - though that does seem to mean not accessing any of PUK’s online support services services unless I circumvent the homepages but I still have this choice. It’s a shame that I cannot impose the same restriction on some of my friends and acquaintances but there you go .

On a more serious note, this whole situation has caused me to think about long-term care, medical care and Parkinson’s.

I totally understand that for very many people living with Parkinson’s, the involvement of family in both medical and general care is both very welcome and very gratefully accepted but I live alone and personally, I do not want friends and random relatives being encouraged to get themselves involved in my medical care and make decisions on my behalf while I remain perfectly capable of making decisions for myself. My concern is that some help and advice sheets appear to be encouraging those in my life to consult medical professionals treating me without any mention of the need to discuss this with me first. I may end up suffering from cognitive decline but then again, so may my friends and relatives and there is no suggestion that I should get involved in their medical care until such time that it becomes necessary. I sometimes feel that my diagnosis of Parkinson’s has turned me into some sort of non-person who has suddenly lost all sorts of previously assumed rights.

It really is just a personal opinion but for me, equally worrying is the implication (or maybe assumption?) that families have no option but to take on the care of a relative with Parkinson’s Disease. I know that many people take on this role out of love or a sense of duty and provide a very high level of care for many years in spite of the incredible toll that this takes on their own lives, and I firmly believe that there is not nearly enough support for people in this position, but I also know of people who take on this role because they feel that they have no choice even though they do not have the capacity/ability to do so. This can lead to dire consequences for all parties involved but with the lack of monitoring of such care arrangements along with the already existing dearth of neurology support services and a likely move towards digitalisation of services following this crisis, where will any safety nets be for those living in informal care situations that have gone disastrously wrong? I have to admit that one good thing to come out of recent events is that I will be having a conversation with my siblings about this as soon as I am allowed to meet them face to face.

Of course, returning to the marketing campaign that I wasn’t going to mention again, the societal problems caused by Parkinson’s Disease (those of us living with Parkinson’s Disease) will indeed be solved if a cure is eventually found but that won’t help me in my lifetime and in the absence of a functioning social care system or any improvement in treatments/a cure, I’m not sure what the answer is. Having said this however, I still don’t think that the assumption that all family members have a duty to take on the role of long term carer for a sick relative, along with the assumption that people with Parkinson’s should have to accept the role of being cared for by relatives irrespective of whether this arrangement is right for either party, should go unchallenged.

Having rambled on way too much in the early hours (as ever ), it may well be that nobody reads this - or anybody who does loses the will to finish it - but on the off chance that somebody has both started and got this far down my ramble, I’m just wondering if anybody knows if I do now have to explicitly inform medical professionals (and I include services such as speech and language and OT under this heading) that I do not want them to talk to family members or friends without my permission or can I assume that I still have the right to expect confidentiality in this respect - unless I am at some point formally assessed as lacking the capacity to make my own decisions - because I am increasingly unclear about this?

Jx

[Tot]

Hello Jackson
Haven’t responded to all your point and apologies this too has turned out to be long. Hope you make it to the end!
Yet another thought provoking post that needs some thought before replying. There is one element in your post that resonates particularly because it is one that I too grapple with ie carers and being seen as an individual who happens to have Parkinson’s but who also lives alone and managing just fine thank you very much.
As you say Jackson people take on the carer’s role for all sorts of reasons commonly in my experience it is a role that is gradually acquired over a period of time. Often at the beginning it is a fairly light role whatever the condition, because the person can still function relatively well. As time goes on and the chronic condition worsens so the carers role gets ever more demanding. Many don’t don’t see this coming or to be more precise, don’t see the potential impact it has - it can be a relentless, exhausting and thankless role that could potentially go on for many years. It can take its toll on both physical and mental health. The carers role can carry a very heavy price.
The so called informal carers ie family and friends saves this country huge sums of money in terms of health and social care. There is little incentive therefore, for the government of any persuasion to heavily promote the fact that family or friends do not have to take on this role. That’s not to say many would take this on irregardless and that’s fine my point is, that informal carers do have a choice. They do not have to do it at all nor do they have to continue beyond the point that is acceptable to them. Many choose to continue when this is pointed out but the very fact that they have made an active choice rather than it being something they have to do can make a difference. I am not suggesting for one minute this is easily achieved. It goes against the commonly held view that where there’s family then care is on tap, it does not address the huge emotional considerations that go with the caring role the arguably the biggest being guilt, it does not address that hardly spoken about issue that not all are cut out to be carers (which carries a stigma all of its own.)
Finally it doesn’t address the system and many have no real understanding of what this involves. Social care services are an easy target, heavily criticised by almost all comers on just about every issue you can come up with and everyone always knows someone who has got xy and z while they can’t even get x, everyone is always willing to relate a horror story. Yes you do get some poor staff as you do in all areas of employment but most work very hard in difficult circumstances to do the best for their clients. Increased demand, higher expectations on what is acceptable, increased costs and shrinking budgets have all led to ever more red tape and hurdles to jump to get anyone anything and that all takes time. To bring it back to carers, although now having some recognition in terms of qualifications it remains largely unseen as a career choice that will
give a reasonable standard of living. For people with Parkinson’s in particular, I think one of the biggest issues is lack of flexibility, that help may be needed on one day more than another, that the main driver is usually a need for personal care when I can manage that but not other things like housework as well. My concern post pandemic is that this will all become even harder not least because money is not going to be exactly plentiful but the fact remains informal carers do have the choice to opt out if they so wish. An option not open to those living with Parkinson’s or any other chronic condition come to that.
Like you Jackson, I have no wish for my family to be my carers. I want them to come to see me not because I need help. Practically as soon as I got my diagnosis it was assumed I had a carer. As well as coming to terms with the fact that one has a chronic condition that will worsen over time you also have to take on a lot of other stuff like educating just about everyone to sit on their hands and I will ask for help if I need it, to dispel the endless myths about Parkinson’s or indeed educate about a very poorly understood condition. To my mind however the worst part is your invisibility when dealing with any of the agencies involved. DWP in its various guises have all spoken to me as if I was six years old and should get mummy or daddy to help. I go to all my Parkinson’s apps alone to ensure that they speak to me not whoever I may be with and who is invariably considered my carer. During a recent hospital admission it was a constant battle to get my meds on time and because they didn’t kept asking how I managed at home when I went right off my feet; the disbelief when I said I didn’t have help at home was clear. There are as you point out a whole raft of issues that are not properly addressed. I think for the foreseeable it will be for each of us to challenge our own societal barriers of whatever type. I for one am not expecting it to change much. Similarly the conflicting demands of research for a cure and research for better services for those of us who live with it today will go on. I don’t know what the answers to all these issues are. My own view is that you challenge where you can, inform and educate when you are offered an opportunity and make the most of what you have.
However much our system may be lacking, I have no doubt I wouldn’t be able to afford the insurance for treatment I’ve had to date as would be the case in other countries.

[Reah]

Hi @Jackson,

Thanks for sharing your thoughts with us. I just thought I’d chime in to share the following information.

Confidentiality from medical professionals should be assumed unless he has given clear permission (usually in writing) that he wants them to inform certain people. This can be by providing a written statement agreeing to this, or other more formal means such as power of attorney. There may also be exemptions in certain circumstances connected to safeguarding when confidentiality has to be breeched.

You may find the link below helpful: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/confidentiality

I’ve also included a link which to a case case study explaining good practice: https://www.gmc-uk.org/ethical-guidance/learning-materials/sharing-information-with-family-members

I hope you find this useful.

Best wishes,
Reah

[Jackson]

Thanks for this Rhea. It’s really helpful and is much appreciated. I’ve read through both documents and while my understanding of medical/legal speak is limited at best, they do seem to suggest that a person’s right to privacy in terms of medical treatment and healthcare does not change unless they officially lack the capacity to make their own decisions though there does seem to be scope for a little wiggle room in terms of the situation for those who need regular care. My overriding thought is that I would not like to be a doctor trying to wade my way through this issue.

It’s not the time to be bothering any medical professional with anything that is not absolutely essential at the moment but if the Covid pandemic ever ends , from what I read it would seem that the best thing to do would be to raise this issue at my next appointment to ensure that my wishes are appropriately recorded.

I’m still not sure as to whether providers such as Speech and Language Therapists are covered by the same guidance. Some help sheets on these services seem to imply that others have a right to access information and advice from such providers with no mention of the need to get permission from the person receiving treatment but maybe this step is assumed to have happened . I’ll do some more research.

Thanks again for the information.
Jx

[Reah]

Hi @Jackson,

You’re welcome - I’m always happy to help.

I agree, (although I’m sure you’re not bothering any health care professionals with your queries) it would be best to raise this with your GP at your next appointment. With regard to the speech and language therapist, I’d recommend that you contact our helpline and speak to one of our advisers about this. I’m sure you know the number by now, but just in case you don’t it’s 0808 800 0303.

Best wishes,
Reah

[Jackson]

Unintentional I know but on a grey, wet morning with nothing particularly to recommend it, that made me smile. I won’t bother the helpline as I think I now understand the situation a little better but I know where to find the number if I need it - though I don’t actually know it. I’ve only actually ever phoned the helpline a couple of times!
My sister frequently advises me that I ask way too many questions, have way too many opinions and can be a complete pain and although I argue with her, I know that she’s right (I do try to exercise restraint but I need to try a little harder ) Jx

[k800mer]

There is nothing wrong with asking questions, my husband has Parkinsons so I would normally be expected to be his carer and indeed I do help him with things when he asks and I now do some of the things he used to do however I also have a neurological condition so there is no way that I will be able to care for him when he is unable to do most things for himself. We are arranging for a lasting power of attorney as he is struggling to sign anything and wants to do it now although it will not be used until absolutely necessary. Keep asking questions.