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UK govt: Open consultation: Women's Health Strategy: Call for Evidence

Discussion in 'General disability topics and advocacy' started by Andy, Mar 29, 2021.

  1. Andy

    Andy Committee Member

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    Location:
    Hampshire, UK
    Executive summary
    We are seeking your views to help inform the development of the government’s Women’s Health Strategy.

    This call for evidence is seeking to collect views on women’s health. It will run for a period of 12 weeks and is open to everyone aged 16 and over.

    The easiest way to participate in the call for evidence as an individual is by completing the public survey.

    We also welcome written submissions from individuals or organisations who have expertise in women’s health, such as researchers and third-sector organisations.

    This consultation closes at 11:45pm on 30 May 2021.

    https://www.gov.uk/government/consu...ence/womens-health-strategy-call-for-evidence

    Shortcut to public survey, https://consultations.dhsc.gov.uk/talkwomenshealth
     
    ukxmrv, MEMarge, Kitty and 1 other person like this.
  2. Andy

    Andy Committee Member

    Messages:
    17,094
    Location:
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    From Chronic Illness Inclusion email

    Women's Health Survey
    The government have just launched a consultation for a Women's Heath Strategy.

    Whilst women can respond directly to the survey, we at CII have decided to put in an organisational response on behalf of all our supporters with chronic illness and/or energy impairment.

    In order to do this we have designed a survey which we are asking you to complete. The survey has different sections and you don't need to complete it all in one go. You can save your answers and go back to the survey again, when you have more spoons.

    Whilst we would like you to answer all the sections, you don't have to do so.

    The different sections cover:

    • your diagnostic journey
    • your relationship with health and care professionals, including whether you were believed
    • access to health and social care services
    • access to domiciliary services if you are housebound
    • impacts of Covid 19 on health and healthcare
    We have included some extra questions that are not in the government's survey. These relate to our experiences of not being believed or being denied treatment. These questions will enable us to understand the extent of the difficulties so many of us face.

    All your responses will be kept confidential and will only be seen by our own team of researchers.

    Please respond by end of 29th April.

    https://www.surveymonkey.co.uk/r/CIIWomensHealth
     
    Amw66, MEMarge, Missense and 4 others like this.
  3. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    387
    Thanks Andy, I've completed this.
     
  4. Trish

    Trish Moderator Staff Member

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    Done. Worth doing I think.

    They say they can only use data from people in England for this project, but also want people from other parts of the UK and other countries to fill it in to give them a wider picture to feed into future research.
     
    alktipping, ukxmrv, Kitty and 3 others like this.
  5. Trish

    Trish Moderator Staff Member

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    I have just realised there are 2 different surveys linked in posts 1 and 2.

    The first is a UK government Department of Health and Social Care survey which I haven't done yet.

    The second is run by the Chronic Illness Inclusion Project, and will be used to provide information for their response to the government public consultation. That's the one I've done.
     
  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Location:
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  7. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
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    Location:
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    Just some general comments on online surveys generally and that apply to this survey in particular.

    As a general rule, surveys I have filled in online don't allow people to see the whole survey before they start. So, often, there is a question on each page, I fill in the answer to a question, then realise with the next question (that I couldn't see before I got to it) that I've included details already that should have been put into the question on the next page. If everyone asking surveys online could include a PDF or equivalent that allows me to see the whole survey then I could plan my answers to make them more relevant. As a secondary benefit to me, it would also allow me to work out where the survey is headed, how my answers could be twisted to suit a particular agenda, and whether I want to fill it in in the first place. It is also quite common not to allow people to go back to alter previous answers.

    I mentioned in my previous post [#6] that there is an easy-read version of the survey. But is it an "easy read" because I can see the whole thing? Have they dumbed down the language to make it understandable to a 5-year-old, and therefore it isn't an exact replica of the "real" survey? I don't want to be treated like a 5-year-old. And I want to know what I'm letting myself in for. Therefore I would like a "normal-read" version of the survey to be made available, not just an "easy-read" version.

    I understand that surveys are intended to make it easier to work with lots and lots of data. But the easy-read survey (the only version I have available to me) is asking some questions that I consider irrelevant to my own experience of healthcare, or they allow me to answer a question but not to explain my answer. For example :

    Do you feel OK talking about health issues with doctors, nurses or other health and care staff? (Question on page 8)

    Possible answers are Yes, No, or Not sure.

    If I answer No, but can't explain why I say No, I expect my answer will be interpreted as one or more of the following : I'm timid, I'm anxious, I'm stupid, I'm uneducated.

    The real answer is that I know almost nothing I say is taken at face value when I talk to doctors. I'm assumed to be a lying, attention-seeking, drug-seeking, hypochondriac.

    But then, if I could put that into an answer in a survey, anyone reading the survey would assume "the doctor must be right" because they are so much more honest, truthful, and educated than patients. (sarcasm)

    So nothing I can say would be taken at face value by anyone reading my answer. I'm stuck in a permanent catch-22 because women are so often assumed to be "stupid, anxious, depressed, lying, drug-seeking, hypochondriacs, who are always tired, so nothing they say can be trusted".

    Another question (page 11) : Where do you usually get health information from?

    The real answer is... In many cases I start with (1) links from forums populated with info from other patients, then, if the subject is particularly important to me, (2) I move on to general searches on the web, then (3) I look for more specific information on Pub Med and Google Scholar. When there is something I really, really, want to know and it is something I want to know quickly and accurately, I skip stage 1 and sometimes stage 2 and go straight for Pub Med and Google Scholar.

    But the closest answer available on the survey is "the internet".

    ...

    Another massive issue I have with healthcare generally is that medical records are so inaccurate. What women say is misinterpreted, findings from surgery are fudged or omitted, doctors say one thing to patients, but then omit or obfuscate or lie about findings on medical records. Doctors lie to cover their arses both verbally and on paper (or on computer).

    With the advent of computers those lies get spread around everywhere. If/when I am forced to buy health insurance because the NHS has been privatised my premium will be through the roof because it will be calculated based on what doctors have written. My husband and I won't go on holiday abroad any more (if it was even possible) because my private health insurance for holidays costs an absolute fortune, and yet hardly anything is actually covered.

    ...

    On this link : https://www.gov.uk/government/consu...ence/womens-health-strategy-call-for-evidence

    it says (my emphasis) :

    I would love to answer some of the suggested questions in a written submission. But since I only count as an n=1 personal anecdote, there is really no point in me wasting my time or theirs.
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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    Results of the ‘Women’s Health – Let’s talk about it’ survey
    Updated 23 December 2021

    https://www.gov.uk/government/consu...f-the-womens-health-lets-talk-about-it-survey
     
    alktipping, Peter Trewhitt and Trish like this.
  9. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    @Sly Saint

    Those experiences in the women's voices section are not remotely surprising. But I don't think they picked the worst ones to print by a long chalk - I've seen surveys asking about actual experiences, and what is said and done to the patient was much worse than the examples in the government survey.
     
    Ariel, alktipping, Ash and 1 other person like this.

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