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We want to hear from you: please tell us about your experience of the online community.

[closed]What information do disabled people and their families need?

Ema_Scope

We are researching what information disabled people and their families need, to find gaps in our website information section.

Please give us your views on these questions:

Do you think anything is missing from our existing information and advice?
What do you think we need to write about?
What information is hard to find online?

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Comments

Alex_Alumni

Out of interest, how long is the research into Scope's website running for? Thanks for sharing @Ema_Scope I've announced the post for you

Ema_Scope

It'll be running for a couple of weeks to get as many views from as many people as possible

Alex_Alumni

Great stuff, thanks for letting us know!

chiarieds

Hi @Ema_Scope - mental health is rightly given a section in the online advice & support, but what about physical health/problems? I would consider pain management/coping with chronic pain something very useful, as this can affect those with 'just' physical problems, so perhaps links to this & repeat the exercise section you already have (under both 'Coronavirus' & 'Sport & exercise').

I also mentioning in the online community about breathing properly rather often, as this can help with both stress & pain; aid relaxation, & should be something we all do (sorry, but the physio in me keeps coming out). However, this may be helpful for those with either mental health/physical issues, or both. Here's a link to what I mean: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf

You could also add pelvic floor exercises, which can help with urinary incontinence problems, e.g. : https://www.nhs.uk/common-health-questions/womens-health/what-are-pelvic-floor-exercises/

Exercises for back pain, etc. I could go on.....

RoseyG

I haven’t read every page on your site but from a search I couldn’t find any information on LGBT and disability: particularly trans but all encompassing.

It can result in additional barriers when both disabled and lgtbqia+

But disabled lgbtqia+ appear to be invisible.
My son is trans but because he’s also autistic it isn’t listened to and he was refused support and from the support groups I’m in this is quite common for disabled people

Also with benefits: it takes up a huge part but is very basic with no proper depth. Like it focuses mostly on the ‘information’ with no advice if you get what I mean?

Ema_Scope

chiarieds said:

Hi @Ema_Scope - mental health is rightly given a section in the online advice & support, but what about physical health/problems? I would consider pain management/coping with chronic pain something very useful, as this can affect those with 'just' physical problems, so perhaps links to this & repeat the exercise section you already have (under both 'Coronavirus' & 'Sport & exercise').
I also mentioning in the online community about breathing properly rather often, as this can help with both stress & pain; aid relaxation, & should be something we all do (sorry, but the physio in me keeps coming out). However, this may be helpful for those with either mental health/physical issues, or both. Here's a link to what I mean: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf
You could also add pelvic floor exercises, which can help with urinary incontinence problems, e.g. : https://www.nhs.uk/common-health-questions/womens-health/what-are-pelvic-floor-exercises/
Exercises for back pain, etc. I could go on.....

Hi @chiarieds

Thank you for your suggestions, they're all really helpful. We have a page on breathing to help disabled children sleep so this is something we could explore for adults too. We can also have a look at the exercise pages from a pain management and physical health perspective too.

Many thanks
Ema

Ema_Scope

woodbine said:

The big one obviously is benefits, benefits and benefits. Scope would be an ideal place to supply all the advice on benefits that disabled people need, we see a lot of people who are new to be disabled and are totally confused about benefits we have the chance to be the go to place for that help, you only have to look at the number of questions we are asked day after day about entitlement.
Perhaps all the different things that this thread comes up with could be made "sticky" on the front of the forum?

Hi @woodbine

That's really helpful, thank you. Do you think there is anything missing in the benefits section that would help people who are newly disabled?

Many thanks
Ema

Ema_Scope

RoseyG said:

I haven’t read every page on your site but from a search I couldn’t find any information on LGBT and disability: particularly trans but all encompassing.
It can result in additional barriers when both disabled and lgtbqia+
But disabled lgbtqia+ appear to be invisible.
My son is trans but because he’s also autistic it isn’t listened to and he was refused support and from the support groups I’m in this is quite common for disabled people

Also with benefits: it takes up a huge part but is very basic with no proper depth. Like it focuses mostly on the ‘information’ with no advice if you get what I mean?

Hi @Roseyy

Thank you for those comments. Is there anything specific about LGTBQIA+ that you think would be helpful to have information about? For example, you've mentioned support groups.

Many thanks
Ema

Ema_Scope

https://forum.scope.org.uk/discussion/comment/483186#Comment_483186

Thanks Mike, you've raised some really good points. You mention that the focus should be on providing information for BME communities because they are underrepresented. Are there any specific topics or issues that you think it would be helpful to provide information on or that is hard to find online?

Many thanks

Ema

chiarieds

Thank you @Ema_Scope - Some trusted resources you could link to:

from the Physiotherapy Pain Association:

https://ppa.csp.org.uk/content/links-people-living-pain

From the Chartered Society of Physiotherapy:

https://www.csp.org.uk/conditions/managing-pain-home

https://www.csp.org.uk/public-patient/keeping-active-healthy

https://www.csp.org.uk/public-patient/rehabilitation-exercises

https://www.csp.org.uk/conditions/incontinence/exercise-advice-incontinence

There are many resources on the above site using the 'Public & patient' tab at the top.

Then from this: https://forum.scope.org.uk/discussion/75929/coping-with-stress-low-mood-and-isolation-a-support-thread/p1 which has previously been put together by members of the Scope team, please see under 'exercise' videos on 'Gentle Tai chi & yoga' put together by Canadian therapists, which can be adapted to be done in standing & sitting, & also for those who can only use one side of their body, such as someone who'd suffered a stroke.

I feel you should have confidence with all of these links as they've been put together by physiotherapists.

Danielle_2022

@mikehughescq,
I would also like to thank you for raising these points because they make a lot of sense. I do, however, believe that the first step towards being better is to recognise these flaws & listen to the people that they miss when working to make change. We can't possibly know how the information provided on this site relates to every person's lived experiences because that's not realistic, as you said. However, it breaks my heart to think that support isn't widely available to people as well, especially around issues that aren't related to disability, such as sexuality or gender identity. It goes without saying that non-disabled people would have different stories to tell about this because they're not necessarily talking from multiple places of marginalisation, but that doesn't mean we should be able to ignore the more complex intersections & the privilege attached to it, which is too easily done (here and by society in general).

In all of this, perhaps the next step is to recognise that we don't (and simply never will) have all of the answers. We are far from perfect, which I think everyone will agree. Maybe we can instead take some of the categories mentioned above and look to amplify the voices of people inside them, which would also hopefully lead to the access of more relevant resources. At the top of my head, I'm thinking about Imani Barbarin (Crutches and Spice), though I'm sure there are many more

SueHeath

Morning,
It might not be the sort of thing your looking for.
I have just seen, what i think is a great thread.
It was started a while ago by Foodie, but not much uptake on the site it is on, but i think people may be interested in it.
Total Beginners and People who are scared of cooking or can't cook.
Just a thought.

Danielle_2022

Just to follow on from @SueHeath's comment, I thought I'd share a link to the thread here. Sounds like something that a lot of people would appreciate help getting into!

Ema_Scope

Danielle_2022 said:

@mikehughescq,
I would also like to thank you for raising these points because they make a lot of sense. I do, however, believe that the first step towards being better is to recognise these flaws & listen to the people that they miss when working to make change. We can't possibly know how the information provided on this site relates to every person's lived experiences because that's not realistic, as you said. However, it breaks my heart to think that support isn't widely available to people as well, especially around issues that aren't related to disability, such as sexuality or gender identity. It goes without saying that non-disabled people would have different stories to tell about this because they're not necessarily talking from multiple places of marginalisation, but that doesn't mean we should be able to ignore the more complex intersections & the privilege attached to it, which is too easily done (here and by society in general).

In all of this, perhaps the next step is to recognise that we don't (and simply never will) have all of the answers. We are far from perfect, which I think everyone will agree. Maybe we can instead take some of the categories mentioned above and look to amplify the voices of people inside them, which would also hopefully lead to the access of more relevant resources. At the top of my head, I'm thinking about Imani Barbarin (Crutches and Spice), though I'm sure there are many more

@Danielle_2022 thank you for the link to Imani Barbarin's twitter page. If there are any specific topics that cross the intersection between disability and marginalised groups that you think we could provide online information about please let us know. This thread will be open for a few weeks so feel free to pop back any time.

Many thanks
Ema

Ema_Scope

SueHeath said:

Morning,
It might not be the sort of thing your looking for.
I have just seen, what i think is a great thread.
It was started a while ago by Foodie, but not much uptake on the site it is on, but i think people may be interested in it.
Total Beginners and People who are scared of cooking or can't cook.
Just a thought.

@SueHeath, thank you very much for sharing and thanks @Danielle_2022 for sharing the link! Is there anything specific about cooking that you would like information about? For example recipes or kitchen gadgets?

Danielle_2022

@Ema_Scope,
I'm thinking in particular of the difficulty that some BIPOC have when trying to access care or treatment as a result of medical racism. This is a huge issue that I have heard so many different stories about and I think having discussions about it is (hopefully) the first step towards creating an environment where this feels like uncomfortable practice for doctors etc., rather than inconsequential action. Another issue is also ableism within academia, which is something that I felt very unprepared for during my degree, but very commonplace.

RE the cooking: recipes and kitchen gadgets would be a great start!

foxuk

In the 90s there was a court ruling that led to a mobility question on the DLA form being changed. The result was a How far can you walk before experiencing severe discomfort or pain? This was qualified by a statement that this should be assessed on the levels of discomfort and/or pain accepted by non-disabled people NOT stoical disabled people. (my wording is probably inaccurate).

This led to one of the most enabling methods of advisors obtaining benefits that disabled people needed. Pain = benefits - it really is/was that simple.

Anyone who has experienced the system knows that the 'how your disability affects you' is in need of proof these days. And the easiest means of proving pain is by being prescribed pain relief for moderate or severe pain.

Many of us on opiates know of the imported hysteria from the USA about opiates. (My wife is Californian and we have a very big family there). In the USA it relates to Oxycontin and overprescription for profit by a medical profession with questionable ethics.

GPs in the UK are under extreeme political pressure to reduce their prescription of opiates. This is welcomed by the 'be a disabled hero' type of doctor who has never personally experienced the pain of disability.

Is it beyond belief to join the dots and realise that no or less pain relief equals no benefits?

I am past retiring age. I am only going to get worse not better but my surgery is presuring me to reduce morphine intake and in effect cease to function as a relatively active disabled person.

My wife is also disabled with a progressive neurological condition and is also being pressurised to do the same.

One of the 'reasons' given by my/our individual GP was one of his coleagues had raised the question of the practices legal responsibilities to reduce opiates.

People insist in calling them pain killers. Some call them pain relief. Really they are pain reducers and that is all.

People under this sort of pressure need to know they are not alone. This is not caused by data from testing but based on the opinion of medical professionals with no personal experience of disability.

Danielle_2022

Hi @foxuk,
I agree with you on that. I’m physically disabled to the point where walking and standing has never been possible for me, anyway, but proving my entitlement to benefits still wasn’t an easy process. It involved being asked a series of invasive questions about my exact level of inability and what my care needs look like. All things that I do my best not to think about on a day to day basis, as you can imagine. I know that it’s even harder for my friends with less visible conditions — and some of them were turned away completely.

There is such a stigma around the prescription of pain relief and as you said, this can make it so hard to access. But of course, the people making these decisions have generally got no experience of living with chronic pain, so it’s impossible for them to perceive these cases without a certain amount of prejudice. Moving forward, I think there definitely needs to be more education about it. We deserve to live without pain, as much as is possible. The first step in that is to ensure patients are being properly heard and validated in their experiences, you know? Thank-you for raising it. The fight is not over yet

Ema_Scope

@foxuk
@Danielle_2022
Thank you both for sharing your stories with me. On our completing your PIP form page we include information about talking about your bad days. Is there any other advice you think would be helpful to include?

Also, you both mention talking to your doctors and the decisions they make. Are there any specific questions you have about this that we could provide information about?

Many thanks
Ema

foxuk

Ema_Scope said:

Also, you both mention talking to your doctors and the decisions they make. Are there any specific questions you have about this that we could provide information about?

I am out of the regular application hassle - being 67 all I should have is light touch phone calls in future. All I was doing was pointing out a problem that many other people will face with assessments.

The simplest way of demonstrating the experience of pain is by being believed by a doctor and having relief for moderate or severe pain prescribed. The court decisions in the 90s created precident.

If we examine the actions of medical professionals over the past two decades there has been an exagerated 'belief' in opiate reduction based on the opinion of medically qualified pain experts. This has been extended by the opiate problem in the USA which was not caused by patient abuse but by medical professional profiteering.

Our (now retired) GP was quite open about the reason why some of her partners were delaying and refusing to sign repeat prescriptions for pain relief at her surgery. 'It's due to political pressure' was her statement.

If we ask the simple question 'why would politicians want to remove pain relief from disabled people and consequently reduce the ammount we can do for ourselves?' There is only one simple answer - removal or reduction of pain relief removes the proof of pain and consequently prevents benefits being approved at assessments.

I realise that charities have learned not to bite the hand that feeds in the past couple of decades but what other reason could there be that fits the facts.

When I put the same post up on facebook a relation (who is disabled) detailed that because she was allergic to moderate relief and not able to take it her advisors in California had refused to take on her case. A legacy of Republican administration there has been imported here to reduce expence.