Inherited disorder and deleted records. Where to go?

Discussion in 'Diseases & Medical Conditions' started by eric kingsley, Aug 30, 2021.

  1. eric kingsley

    eric kingsley Well-Known Member

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    Hello. Hope you are all well. This post concerns a hereditary genetic disorder but all those named are deceased. The condition is Huntington's Disease (HD) which is an autosomal dominant disorder meaning that if a parent is affected then there's a 50% chance a child will inherit it, regardless of sex. There are numerous references on line to the symptomatology. It was first identified by George Huntington in the US in 1872 at which time it was referred to as Chorea (from the Ancient Greek for "dance", apparently) and later Huntington's Chorea.

    These are the people concerned, luckily they all appear on the "Minter Exchange", the non-commercial genealogical web site, and I've included their IDs so they can be found easily if needed. All IDs start with a capital "i".

    Frank John Minter (I540) b. Q3 1911 RD Woolwich d. Q2 1987 RD Gravesend - Married Q2 1939 RD Greenwich

    Winifred Horsham (I541) Frank's wife b. Q2 1915 RD Greenwich d. Q3 1975 RD Greenwich

    Brenda Eileen Minter (I542) Frank & Winnie's only child who died childless. b. Q3 1944 RD Oxford d. Q4 2018 RD Norfolk

    Robert Charles David Minter (I536 ) One of Frank's brothers b. Q3 1903 Woolwich d. Q4 1983 Bexleyheath, Kent

    Frank and Robert were my uncles. A relative tells me he spoke to Brenda's husband, off and on, for some years before and after her death and he was informed that the cause of her death was HD. It follows that either Frank or Winnie had HD but I don't know which. If it was Frank then there's a chance that Bob had it too and so on, back through the generations.

    Uncle Frank and Uncle Bob both ended their days in St Alfege's Hospital (which has its own Wikipedia page) which was eventually replaced by Greenwich District Hospital. All medical records are presumably now destroyed but the story is that later in life they both developed what would be called in PC parlance "mental health problems", and spent years in the hospital where they eventually died. I am told by a relative that they would routinely argue and occasionally fight in their hospital ward.

    The story continues that Frank had become embittered and a rift had developed between him & his brothers for 3 reasons -

    1) During WW2 he was a batman to a captain who he was very fond of. Sadly during hostilities this captain was shot in front of him by a sniper. Frank found this, understandably, very distressing.

    2) Frank was caught up in the evacuation from Dunkirk and was, according to his sister, "in a terrible state when he got home, his uniform was hanging off him in strips". She felt he was traumatized. Plenty of others went through this of course.

    3) Frank's father got some of his sons work in Warspite Wharf processing spices unloaded from ships on the Thames. For various practical reasons he didn't do this for Frank. The Wharf no longer exists of course but I believe it was at the end of Warspite Road (eg. SE18 5NX). Frank thought he had been treated unfairly.

    These were the causes of Frank's grievances & imbalance. Bob, it is said, had a much more mundane "life-altering trauma". The story is that while walking under some scaffolding a workman dropped a tool, let's say a hammer, which hit him on the head. He was not seriously injured but "was never the same again". And started to "let himself go". He didn't care about his appearance I am told and would appear in front of visitors wearing his vest & braces (I had to laugh). Although these details give their story a human dimension I am not entirely convinced & suspect there may have been a genetic component to all this. I've ordered their death certificates. I've also ordered the death certificate for Winifred. It sounds like Frank could have had a difficult life and maybe his wife and only daughter both died from HD. These are my questions -

    * I assume their medical records will have been deleted long ago. Is there any way I can find out more about the circumstances of their admission to hospital? Were they voluntary patients or where they "sectioned"? What were their diagnoses? Were they kept in hospital or simply allowed to stay?

    * What are the chances I'd get access to Frank's WW2 record if I apply to the National Archive? Nephews and nieces are his closest living relatives as far as I can see and I'm a nephew. I'd like to know more about the commissioned officer who he was he was serving.

    * If one or both uncles were sectioned then is this a legal process that might leave a trace somewhere?

    * Is it possible to discover if St Alfege's ever had a ward dedicated to patients with mental health problems?

    Thanks in advance for any suggestions.
     
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  2. mugwortismy cat

    mugwortismy cat Tenacious to the End!

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  3. Daft Bat

    Daft Bat Administrator. Chief cook & bottle washer! Staff Member

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    For Military records, take a peek at the gov.uk website here:
    https://www.gov.uk/get-copy-military-service-records

    It does say that you can apply for the records of someone who is deceased if you are researching them.

    Although it mentions sending a service number, I didn't have one for my Grandad and they still sent me the information.

    So, you should have a chance. :)
     
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  4. eric kingsley

    eric kingsley Well-Known Member

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    Thanks very much. Very helpful as always. Following the link from mugwortismycat I learned that Greenwich General Hospital was closed (asbestos) in 2001 & all patients were decanted, mostly to the Queen Elizabeth Hospital in Woolwich. So it is at least possible that Frank (d. 1987) and Bob (d. 1983) ended their days there. I can't make any progress at the moment with the London Metropolitan Archive although I did visit, in person, to try to complete Stage 2 (personal ID & proof of address) of my Library Card application process but I was not allowed to go "upstairs" where the Archive is and the application could have been finalised because I had not booked a "slot". There are only 12 slots per day and they appear to be booked up for weeks. It looks like access is basically highly restricted at the moment because of, Reception said, "The Covid". If you book a slot you have to specify what documents, exactly, you are coming to see. I can't really do this. I'll just have to be patient I guess. The LMA seems to be trying console people with the fact that you can read a general description of their archives on line but you can't actually see them. The web site suggests they'll do a search for you if you pay. I will email them & ask about this.

    As Daft Bat suggested I will apply for Frank's WW2 records and see what happens. It would be interesting to know who the captain was that he served. Maybe there's a war grave.

    When the death certs turn up I'll let you know what they say.
     
  5. Londoner

    Londoner Will always roll up her sleeves and dig around

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    Be aware that Service Records take a long time to arrive. I applied for my father's last September and am still waiting!
     
  6. eric kingsley

    eric kingsley Well-Known Member

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    I've heard that it can be a bit slow. Do they send any kind of confirmation? Something that says that in the fulness of time they will dispatch them. Or are you just left to hope.
     
  7. Daft Bat

    Daft Bat Administrator. Chief cook & bottle washer! Staff Member

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    I don't recall them sending me any confirmation but have just checked the dates for mine.

    I sent off for it at the beginning of September 2018 and received it in February 2019 - 5 months.

    However, this was before the pandemic hit and staff started working from home in a lot of cases. I expect that there will be rather a backlog now that staff are getting back to offices where they can.
     
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  8. AnnB

    AnnB Editor in Chief who is Hot off the Press!

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    I never received any sort of confirmation either. I think I've sent for 4 over the years, three of which took about 4-6 months to arrive and the other only took about 2 months, but, like Jan, this was all before the pandemic hit. They each provided varying degrees of information. My father's was very spartan, but this was because he was a POW. My father-in-law's was full of information and the MOD even sent his pay book which had been stored with his records. The others I got for other people so have passed them on, I remember that one was very detailed but the other was less so. Good luck :)
     
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  9. Murfomurf

    Murfomurf Well-Known Member

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    There is a Huntington's Disease research group at Flinders Medical Centre in Adelaide who may have some very long pedigrees for families containing HD members. Should I enquire for you? (I used to know some of the researchers so they would not be alarmed by a request).
     
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  10. PeterG

    PeterG Well-Known Member

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    Please see the relevant LMA research guide -
    https://search.lma.gov.uk/rg_pdf_creator/index.php?research_guide=60

    The dates you're interested in are much too recent to expect to be let loose on the files in person. However under Freedom of Information you can request the records (you'll need proof of death). LMA staff will extract the records for you (if they have them). There is a charge.
     
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  11. eric kingsley

    eric kingsley Well-Known Member

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    Thanks. Please do. I'd be impressed if they had a record that linked to Brenda.

    At the moment it looks like it might have been on her Mum's side of the family. I only say this because if her Dad had the gene then one of his parents would too and there'd be a probability that one of his siblings (and possibly their offspring) would have had it, but there's no sign of this. However, it can develop late in life & death may intervene for some other reason before there are obvious symptoms.

    It's also a remote possibility that she was misdiagnosed. I don't know if her diagnosis was based on a DNA test or on clinical observation. Although de novo mutations in the HTT gene aren't thought to be the cause of HD there is now evidence that de novo mutations in the RNF216 gene can produce a disorder that looks very similar. This then wouldn't have been inherited. A research paper was published last year from a group in Shanghai which is freely available on line called "A novel de novo RNF216 mutation associated with autosomal recessive Huntington-like disorder".

    Since you mentioned the Adelaide group I've been wondering if the NHS in the UK keeps any kinds of records of families that might carry mHTT. It would be sensible, but I can see the view that this would represent unacceptable State intrusion.
     
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  12. eric kingsley

    eric kingsley Well-Known Member

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    I'm still waiting for the death certs.
     
  13. eric kingsley

    eric kingsley Well-Known Member

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    Well, I was wrong, again. Uncle Bob's death cert. turned up later and it clearly names Huntington's Chorea as one cause of death. The address under his "Occupation and usual address", 1 Old Bexley Lane, is the old address of Bexley Hospital, a psychiatric hospital which closed in 2001. Uncle Frank's will arrive tomorrow or the day after. I'm sure it will be the same. I'm happy to post the images if needed with the name, qualification, signature and usual address of the informants obscured as it is possible these people are still alive. The question for me now is am I brave enough to get a DNA test?
     
  14. dizzyme

    dizzyme Well-Known Member

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    I have a feeling that if you are testing for something like Huntington's, they like you to have counselling beforehand so all the implications of knowing if positive, how that will effect your life going forward.

    Good Luck
     
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  15. eric kingsley

    eric kingsley Well-Known Member

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    The 2 attached images are clipped out cause of death sections from the death certificates for my Uncles, Frank & Bob. They contain no names, addresses or signatures of anyone else apart from the medical officer certifying the death.

    The certificates both named "place of death" as 1 Old Bexley Lane (Bexley Hospital). Bob's clearly names Huntington's Chorea (HD) as a cause of death and includes "Senile dementia" but I think this may be an error in the sense that HD causes dementia. The doctor may not have been knowledgeable about HD.

    Frank's just gives a single cause "Bronchopneumonia". Again I think this is an error. Frank's daughter Brenda, who I mentioned in my first post, signed Frank's certificate as informant. As I also mentioned, I have been told that she went on to die from HD herself. Her husband later said that they'd never known who she inherited it from. It occurred to me that if she never saw Bob's certificate, was never made aware of her Dad's full diagnosis and only ever saw this certificate then she wouldn't have known that she herself was at risk. All very sad. Uncle_Bob's_Death_Cert_clipped.jpg Uncle_Frank's_death_cert_clipped.jpg
     
  16. Murfomurf

    Murfomurf Well-Known Member

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    Sorry I haven't been on here for a while- life and stuff.

    I am contacting the South Australian research group. You SHOULD contact your local NHS centre or the national one and tell them you have discovered Huntington's in your pedigree, would like to talk to someone and to have a DNA test. Better to get active on the case and clear up any doubts. The medical community has always been keen to prevent inherited diseases like Huntingdon's as they cause suffering far beyond the individual with a current diagnosis. Read this and do what suits you:
    https://www.nhs.uk/conditions/huntingtons-disease/
     
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  17. Murfomurf

    Murfomurf Well-Known Member

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    I have contacted the South Australia researchers via email and I'm awaiting a reply. They seem to investigate cases all over the place but not just Huntington's disease these days- basically any genetic diseases that cause mental impairment, plus those arising spontaneously from mutations.
     
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