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Shaken up. New news & bad timing.

(140 Posts)
MiscellaneousAssortment Wed 13-Jan-16 13:27:25

I've written before about my fucked up (& mostly dead) family.

Mumsnetters helped me hold it together over Christmas. My dad died a year and a week ago. My sister died a few years ago and it's the anniversary of her death today.

I'm severely disabled, started to get ill 5 yrs ago.

The whole thing has been a living hell as my parents have shrouded all family history in mystery and silence. And deliberately lied about stuff that would have helped me and my sister, and my dad too. My mother has been particularly cruel and that's what my other thread was about.

Just had a call from a diagnostic service I gave a tissue sample to a few years ago when I got my first diagnosis. They've found a genetic abnormality which might mean I have something different from what I thought. It's in the same ballpark but from first glance it's more serious. I'd always hoped I had the mildest type of the original condition I was told I probably have. But this new one doesn't seem to have a benign type.

I don't know why I'm so shaken up. I knew everything was blurry and best guess as I have no access to my sister or fathers medical records.

She asked me if I could get my mother to give consent for them to access my dads post mortem. And they're hoping there was a saved tissue sample so they can run tests on it to see if he had the same genetic variation. It would help a lot in how my condition is managed and treated. And my little boy.

I will try and have asked them to send a letter explaining why they need access. But my mother won't. Just like I was blocked before. I really want to leave it all behind but I can't.

Oh god.

PausingFlatly Wed 13-Jan-16 15:26:09

Oh that's grim. Sorry it's more bad news.

I've found this about accessing a dead person's medical records without consent of the Personal Representative (ie your mother):

I can't tell from the wording whether you automatically get access from being your father's child. But if that fails, you should have a good chance under the "case by case" permission.

From your doctor's POV it would be more straightforward to go via the Personal Representative, so I can see why they asked. But given that's ruled out, the other routes beckon.

Hope you can shovel as much of the donkey work as possible onto your doctor or a friend, rather than it being yet another diversion of your precious energy.

MiscellaneousAssortment Wed 13-Jan-16 21:52:24

Thanks Pausing, i need to look at that other option properly with my brain in (it's currently checked out of my body, God I'm exhausted).

Realistically I need to go around my mother, not through her. I wonder if that works for people not wanting to make a claim?

After the call today it felt like some horrible dejavu with sensible healthcare professionals being all reassuring and well, sensible, trying to reassure me that of course a parent would want to help their child when they really understand why they're asking... And me with being totally at a loss to explain why I don't think it's as simple as that.

Though she did change tack somewhat after I told her that I got blocked from being able to phone the hospital about my dad. Why can't I sodding move on? Keep getting dragged back to the most awful bits of life.

I hate that feeling of being stretched between the reality of others and the reality of my mother. I've spent a lifetime trying to navigate the massive gaping hole between. Am bone tired and feeling very very old.

Am disorientated. I have spent the last 5 yrs living with one condition. Finding others 'the same as me'. Going to specialists in it, specialist physios, consultants, support groups, fb... Fighting for understanding and educating people.

And now it's all up in the air.

In some ways it doesn't matter, like, it's still in the same group of inherited conditions. They often get mistaken for each other. And are all very similar. So getting in the right area is at least something I suppose (that makes more sense thinking about my last thread). But there are differences. And for me and DS those differences could be massive.

Ffs. I can't process it.

Should I tell my GP? Or no point until I've been through it all and have the facts (if facts are to be had). It feels big NOW though, not in however many months...

Devilishpyjamas Wed 13-Jan-16 22:19:46

Yes talk to your GP.


It sounds a horrible situation xx

GiddyOnZackHunt Wed 13-Jan-16 22:22:17

Can a GP access medical records of a deceased person in order to help a patient I wonder?

MiscellaneousAssortment Wed 13-Jan-16 22:26:30

I don't think so, though don't know so.

What would my GP do? He'll know even less than me. What if he listens then says 'right, and what do you want me to do today?' And I won't have an answer except please just make it stop which he can't, being a GP and not God.

Just been reading about it. It's not good news.

PausingFlatly Wed 13-Jan-16 23:10:29

Would it help to develop a brief "pitch" about the situation with your mother, that you can parrot without going there emotionally every time?

"I'm afraid I'm estranged from my mother. Among other issues, she has a long history of withholding medical information from doctors. This led to inappropriate care for my father and sister, and she didn't change even when they were dying."

PausingFlatly Wed 13-Jan-16 23:15:14

Here's the NHS page about accessing medical records:

It says much the same as the first link, but adds: "After a person has died, their GP health records will be passed to Primary Care Support England, so they can be stored. To access their GP records, apply to the records manager in the relevant local area. The deceased person's GP can tell you who to contact, or you can access a list of local services.

And there's link which may help you work out the contact for the person you'll need for your family.

GiddyOnZackHunt Wed 13-Jan-16 23:18:37

I would do what Pausing says but put it in a letter to your GP or a consultant if you have one. Then book an appointment for a week later which might give them a chance to discuss it with colleagues and formulate an answer.
The practice manager may be able to do the leg work and the GP just authorise things.

PausingFlatly Wed 13-Jan-16 23:24:56

(I'm not minimising what you're going through to process this. I just find it helpful having a prepared line to trot out without engaging too much, so it's not a showstopper every blooming time. I may have slightly too much experience of important conversations going tits up because I burst into tears. )

MiscellaneousAssortment Wed 13-Jan-16 23:49:25

It would be great if GP could do it, I can't bear it even if I had the physical ability. Are post mortems kept in the same place as all other health records?

Got upset reading something which suggests even stronger than previously that if they'd have known what to look for, it might not have gone the way it did. For ducks sake, round and round on that merry-go-round again. Not a very merry-go-round this one. Anti-merriment in fact. Though if it is all true and this new syndrome is what's in the family, my failure to get anyone to listen to the family history isn't such a terrible failure... If we don't have what I believed we did have.

Ok off that funfair ride. It's toouch to work out and it's late. I'm going to rifle through kitchen cupboards for the dregs of Christmas sherry.

New potential syndrome is very rare (estimate of 300 people in UK), and average mortality is 37, first damage done average 28. It's defined by aneurism's vs 'a likelihood but who knows really' of the previous one. I liked the odds of the other one a lot better. I hope it's all wrong. My poor baby.

PausingFlatly Thu 14-Jan-16 00:10:57

Misc would it help if I phoned the coroner's office in the relevant area and at least found out procedure re post-mortem info?

You could PM me the area. (I won't be offended if you'd prefer to keep your privacy!)

MiscellaneousAssortment Thu 14-Jan-16 00:27:44

Pausing you are a bit of a regular on my 'life is ducking crap here's the next tortuous rubbishness' threads, and very much appreciate your presence and your advice.

Not thinking you minimising, it's hard when people get stuck on the first horror story not realising that was just a catch up episode, not the latest program (or series probably).

Having some 'story so far' phrases would help a lot. I think I find it hard as alot of this stuff won't stay in the last story arc like they're supposed to! Oh and if I condense it I then lose people as it sounds too dramatic/ not normal, basically not credible.

I remember a colleague once said a long time ago, no health stuff on the horizon, but STBXH was treating me badly and I was really struggling all the time to get myself through life/ intense job and support demanding husband as I was so tired all the time and ill (ok that probably was health related but I didn't know it at the time). Anyway, when I was having a whine about him/ life she said 'oh but you thrive on the tortured love stuff, you want to have the dramatic highs and lows' and it really shocked me as that's exactly what I didn't and don't want. It's what other people did to my life, and me not protecting myself from it... There's a horrible irony that I'm trapped into this one awful thing after another and I can't walk away as its medically important. So I learnt a valuable life lesson but I'm still going through the mill. Bah bloody humbug.

I resent it so much, and it feels like I'm using up every ounce of everything to keep life steady and if I get through another traumatic horrible thing, there's no reward, just another horrible thing thrown at me.

I don't want today to have happened like this. I want to play with DS as late Xmas parcel arrived today, and help finish his homework which is left unfinished.

Sorry feeling sorry for self. Again.

PausingFlatly Thu 14-Jan-16 01:44:01

Blimey, don't apologise for feeling sorry for yourself! I'm continually in awe that you keep going at all.

Your threads struck a chord because I have a diagnosis of M.E. (so may actually turn out to have one of the group of conditions you have). I've been through a period of mostly-in-bed, although I'm lucky enough to be improving now.

And I have a self-centred martyred deceitful difficult member of family, but nowhere near as bad as yours.

I see you coping with much worse than me... and doing a much better job of it than me.blush

So I don't want to sound like a crazy stalker laydeee, but I want to be a person like Misc when I grow up.grin

ThumbWitchesAbroad Thu 14-Jan-16 02:43:53

Oh misc - so sorry to hear you have had worse news than you were ever expecting sad thanks - hope they can still change tack on the treatment to help you more now.

I think you have to be blunt with your HCPs and tell them that your mother was a vicious cow who didn't believe your sister was even sick up until the point she died; and was pretty much as bad with your father. That she still doesn't truly believe you are as ill as you are, but that you're "attention seeking" (have I got that bit right?) and that there is no way she will do anything at all to facilitate any improvement of knowledge or help you in any way, because it doesn't suit her.

Your mother is appalling, and it is entirely to her discredit, NOT yours. Tell the people that they'll need to find a way of accessing the info without your mother, as she won't do it.

(((hugs))) for you x

MiscellaneousAssortment Thu 14-Jan-16 09:01:46

Thanks. Worried about work. Have gone 'off the grid' somewhat this week and need to be functioning ok.

When there's always trauma it's hard to know what merits sharing with work and hoping they are understanding, and what should be kept under the radar.

ThumbWitchesAbroad Thu 14-Jan-16 10:15:44

Hmm, yes. I would say unless it's going to materially affect your work, then don't tell them. But if it is going to change the way you have to work, or the time off you need, or anything like that then you probably should tell them.

For now, keep it under wraps though, until you have a better idea how it's going to pan out. smile

SitsOnFence Thu 14-Jan-16 10:25:08

Nothing useful to add, I'm afraid, and I haven't read your other threads, but didn't want to read and run

Although I have nothing useful or comforting to say, I do hope that this shit time passes and is soon just a distant unpleasant memory flowers

itsmine Thu 14-Jan-16 10:41:07

Message withdrawn at poster's request.

timelytess Thu 14-Jan-16 10:43:59

Just sending love and prayers for you and your little boy flowers

ivykaty44 Thu 14-Jan-16 10:57:16

I don't understand why you need to go through your mother?

I would apply directly and go through the process without involving your mother. You can order a copy of your father's death certificate and a copy of your birth certificate to show he is your father - then go and apply for the information. Don't even tell your mother

MiscellaneousAssortment Thu 14-Jan-16 11:41:01

Thanks for trying to reassure. Treatment is significantly different though.

Its emphasised across the literature Ive read that if treated / monitored as condition A, people with condition C are highly likely to die as the thresholds used for surgery in A. do not hold true for C. as the thresholds at which surgery required is substantially less than in the more common condition A. That's the way condition C was first identified I think.

Family history is incredibly important as without it, they are working in the dark. For example, any diagnosis of me will only be conclusive if they can find out if my father has the same genetic markers and track the progression of his symptoms (or my sister but that ship has long since sailed). They use familial shared genes and symptoms to work out prognosis. For me and my little boy.

Because it's a systemic condition (any of the possible ones), it doesn't work well with the NHS divisions of medicine. Add in not very well understood plus doesn't attract funding, and you end up with a problem.

For example, the consultant who is officially supposed to be the central one I'm under hasn't even seen me in a year and a half. So has not even had up to date info like ooh, my father dying, or my condition getting much worse, surgery needed etc. Appointments keep getting cancelled/ moved by 12 months. They said at the last 2 appointments (years ago now!) that they want to discharge me and clearly are frustrated when they can't. I was told their role was to 'diagnose and discharge' ... Which is certainly not what the other specialisms believe should be happening. This is the reality of the NHS sad

So it's all horribly overwhelming from a number of different directions.

And that's without the trying to live when severely disabled, reliant on carers and most importantly, with a 5 yr old son and no support network.

MiscellaneousAssortment Thu 14-Jan-16 12:34:27

Tried to book appointment to see GP. No appointments for 3 weeks and can only book three weeks ahead.

I asked them to pass on a message to him.

MiscellaneousAssortment Thu 14-Jan-16 23:11:09

Lord I'm bone tired. What a day. Thanks for being there

PausingFlatly Thu 14-Jan-16 23:27:01


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