I Want It All: Full Treatment Please

After reading about recent misuse of DNRs, people being refused treatment, and people being asked to refuse treatment, I’d had enough. And then a medical professional asked me if I would like to have a discussion around “ceiling of care”. Nope nope nope nope nope nope nope nope nope nope nope NOPE!!!!!!!

I cringe when I see TV programmes showing doctors or relatives saying “It’s what they would have wanted”, though they’d never asked the person. “It’s kinder, really…”, though quality of life isn’t meaningfully discussed, and seems to mean different things to different people.

Do I trust every doctor that I will ever meet to have the same views as me? No. Can I then trust them to make the decision that I would make if they were in that position? Definitely no.

And so I’ve written to my GP. A brief covering letter lay on top of:

– My COVID-19 Advance Care Plan (template available here: https://www.england.nhs.uk/coronavirus/publication/advance-care-planning-guidance-and-template/ )

– A document of my own devising, setting out that I absolutely would want and expect treatment in a range of situations, who to call if a decision needs to be made on my behalf and, of course, Please Always Resuscitate Me. In short, I expect full treatment.

When I mentioned this on Twitter, a request came in (Hi CL!) for the non-personal bits to be shared in the hope they may be helpful for others. Your wish is my command.

Please note: I’m not a medical professional, or a lawyer. This document isn’t a template, it’s a conversation starter, and possibly ender. I wanted to get something on the record quickly. When I can once again roam free, I may get a lawyer to double check everything and make it as binding as possible. For now, it’ll do for me. It’s dated and I’ve signed every page. Please speak to your medical team or a lawyer if you would like something more formal.

Here it is: Advanced directive details removed

You’re welcome to use any part of this to create your own document advocating for your own right to fair treatment.

My only request is that if there is a treatment you wish to decline, please do not listen only to medical professionals’ view of a quality of life they’ve never lived, or something you saw once in a movie with no disabled writers or actors – instead spend a couple of months following a few bloggers or Instagrammers who have had that treatment, and then make your judgement based on real-life first-hand experiences, not from a vague remembrance of an outdated medical textbook or the unimaginative inspiration porn from the mind of a cash-seeking Hollywood director. You’re worth more than that.

Update: NHS England’s visitor policy leaving disabled people at risk

Update: On Friday (1/5/2020), a letter was sent by Fry Law to NHS England. Here is an abridged version of this letter: Letter of Claim – Equality Act abridged

The letter describes my care needs, a few of my most relevant experiences, some data on who may be affected by this policy, and the bits of legislation that NHS England need to make sure they are following. These are:

Equality Act 2010:-
– Public Sector Equality Duty, as they appear to have not given due regard to the need to eliminate discrimination and advance equality
– Reasonable adjustments, as they appear to have failed to take reasonable steps to avoid disabled people being put at substantial disadvantage compared to non-disabled people
[non-legal jargon version: It looks like they haven’t thought about us, and they haven’t even tried to do anything to make sure we’re treated fairly]

Human Rights Act 1998:-
– Article 3, Freedom from torture and inhuman or degrading treatment, as being put in a position where my needs are not going to be safely met and preventing efforts to resolve this is to create a situation where my safety is unnecessarily at risk of harm
– Article 8, Right to respect for private and family life , as family members would be prevented from supporting me, which could create a situation where my safety is unnecessarily at risk of harm
– Article 14, Prohibition of discrimination, as this policy has a greater impact on me as a disabled person than non-disabled people, in a way which could create a situation where my safety is unnecessarily at risk of harm

[non-legal jargon version: This policy seems to put me at risk of harm, remove access to my family, and be discriminatory against me as a disabled person]

What do I want from NHS England? Why am I doing all this? Haven’t they got enough to do right now?

Yes, I know there’s a pandemic on. And that makes this even more important. At a time when the NHS is having to work harder, better, faster than ever, removing those who support NHS staff is a no. Asking nurses to do a job they’re not trained to do is a no. Making disabled people frightened to go get treatment until they have no choice is a no. Putting disabled people at risk of harm which will require further treatment is a no.

At any time, anywhere, ignoring anyone’s Human Rights is a No.

This can be fixed. 2 lines of text added to this visitor policy would do it. I’d even be happy to help them write it.

We don’t need to take this further, unless they’d prefer a lengthy Judicial Review to a half an hour Zoom call and 10 minutes of work. Either way, this will be resolved. NHS England, it’s up to you.

NHS England’s Visitor Policy Leaves Disabled People at Risk – Fighting It

We all have an equal right to life and an equal right to safe hospital treatment. Right now, some disabled people are having to fight for those basic rights.

One of the drivers of these critical situations is a policy by NHS England, which bars visitors but allows exceptions for end-of-life care, a parent of a child, a birthing partner, or where the visitor will be contributing to meeting a person’s mental health needs. This is the one: C0030_Visitor-Guidance_8-April-2020

This means disabled people who have other needs, including physical needs and communication needs, cannot be accompanied to hospital by someone trained to meet those needs. This is resulting in delayed emergency admissions, wasted outpatient appointments, and huge risks to both patients and medical staff.

This policy urgently needs to be changed so that disabled people, their families and their PAs, can work together with NHS staff to ensure everyone gets safe treatment.

I have a very low body weight, I can’t press a call bell, and need to supported in particular places when I’m moved. I’ve been in situations where NHS staff were unaware how to safely meet my health needs; but there’s always been someone there with me to make sure I’m not dropped on the floor, I’m not injured, I’m not forgotten, and I’m not overdosed on routine medication. Most NHS staff are not trained in how to use my equipment or how to safely move me.

In an emergency situation, I would not be able to train every nurse I met on how to do my care, and it’s not fair to be asking nurses to do a job they’re not trained to do safely. I would not be safe.

I’m not the only one. Thousands of disabled people employ PAs or other care and support staff to assist with personal care and day-to-day needs, and many also rely on family. Removing access to these essential people is not only unsafe and wastes time and money, but may be unlawful under the Human Rights Act and the Equality Act.

When I asked disabled people to share their views on this policy, I received 6,000 words in less than 24 hours. Thank you to everyone who helped me reach out and everyone who responded. We will use your words to fight this.

Despite writing to them on the 18th, I’ve had no meaningful engagement from NHS England on how we’re going to resolve this, and so have sought legal advice. A letter is being drafted.

I’m willing to battle this as far as it needs to go to make change happen. If you have media contacts, please pass this on them and ask them to tweet @perry_fleur

 

How You Can Make Sure Your Council Takes Accessible Housing Seriously

After a month of lockdown, housing may be the last thing on your mind. Fair enough. Please download the below guide and put it in a box marked “Post-Lockdown”. Or, if you’re feeling fed up of COVID-19 issues, then read the guide, find your council’s Local Plan, and vent your frustration into building something awesome: inclusive communities.

Here’s the guide: 2741071 final draft planning guide PDF 24 April 2020

I’ve been campaigning on accessible housing for 6 years, and council’s still aren’t taking their duties seriously.

So I asked Louise Whitfield a lot of legal questions. And then some more. And some more. Thanks to her great patience, we were able to produce a guide on how to remind councils that they have legal duties to disabled people when planning, and how to make sure you get your say on their plans.

Download your copy now! (yes, it’s free!): 2741071 final draft planning guide PDF 24 April 2020

 

 

Unrecorded excess fatalities: back-of-the-envelope maths

These figures are presented “as is”. They’re not recent or accurate. When I can, I’ll get hold of the actual data, but for now, I just want to prod what’s going on.

Interestingly enough, data on mortality rates from previous years has vanished from the National Archives. The Excel files are not available to download. Can anyone else access it? Try here, 2019 please: https://webarchive.nationalarchives.gov.uk/20191028221317/https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/datasets/weeklyprovisionalfiguresondeathsregisteredinenglandandwales

Here is the data I would be comparing it to:

Table 1: The majority of COVID-19 deaths occurred within hospitals
England and Wales
Number of deaths Number of COVID-19 deaths
Home 2,785 15
Hospitals (acute or community not psychiatric) 5,105 501
Hospice 504 2
Care Home 2,489 20
Other communal establishments 33 0
Elsewhere 225 1
Total 11,141 539

Source: Office for National Statistics – Deaths registered weekly in England and Wales, provisional: week ending 27 March 2020

 

(Available here: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregisteredweeklyinenglandandwalesprovisional/latest )

Right now, I don’t have access to the number of people who usually die in hospital every week, or in other settings.

But 2,489 sounds like a lot to me.

I have some 2016/17 data in my files. It’s the Adult Social Care Activity and Finance: England 2016-17 Reference Tables. It records 195,610 people as receiving care in residential/nursing homes. That’s pretty close to the population of Aberdeen.

The same dataset records 29,375 people requesting support, and the outcome being a placement in a care home.

This may seem obvious, but care homes only have a limited number of rooms. The maximum number of people entering this population cannot exceed those leaving, unless within the chosen timeframe, more rooms are added. I’m going to assume that the number of new builds is negligible, as is the number of people who move out care homes.

With these assumptions, to get an average weekly death rate for care homes, I just need to divide the number entering by 52. That gives us an estimated 562 care/nursing home deaths per week.

Which is much smaller than 2,489.

Even when thinking about seasonal variation, and without using the best data recorded, this back of the envelope calculation does seem to show something concerning.

This past week and a bit, we’ve all been reading reports of people being refused access to medical care, told not to call 111 or 999, or feeling pressured into agreeing to have a DNR, on the basis of age or disability.

NHS England has since written to trusts and reminded them that ageism and ableism have no place in clinical decision making. Whether the medical profession as a whole will honour that remains to be seen.

I am concerned about the preventable excess fatalities. The people who have not been given a fair assessment when medical resource allocation decisions have been made. The people who didn’t ring an ambulance because the GP told them not to because they’re over 70. Those who had non-COVID-19 medical issues but did not receive treatment because the doctor looked at the name of the condition and not the health and history of the person in front of them.

Even if I were to use the best recorded data, it would be difficult to measure that. Excess unrecorded COVID-19 care home deaths would be estimatable, as would the number of people over a given age.

Disability specific data will take longer, but where there’s a will…

Various conspiracy theories claim the virus was constructed. Evidence does not support that. But the way that we’ve responded to it and the decisions we have made, and their consequences, recorded or unrecorded: that’s on us.

When this is over, but probably before I’m allowed out again, I’ll do the figures properly. I predict unrecorded COVID-19 deaths will be in the 10,000s.
And to anyone reading this who has been contacted by a medical professional acting unethically, please take it further. If they’re using discriminatory factors to deny you treatment, that’s not OK!

I asked WHO

To whom it may concern

Please could WHO release a statement on the importance of avoiding discrimination when making resource allocation decisions during this pandemic and future global health challenges.

There have been disturbing reports from many areas of the UK detailing people being asked not to call 111 or 999 for medical advice and assistance; to consent to Do Not Attempt Resuscitation directives; and being denied access to a ventilator on the basis of age or disability alone.

To my knowledge, no medical ethics body in the UK has approved such practices, and the British Medical Association has on Friday released guidance specifically advising against this.

As a disabled person, I feel very worried about my future and those of the people around me. I want to know that if I am in a situation where I need hospital treatment, I will be assessed on an equal basis to anyone else, as is my right noted in both domestic legislation (Human Rights Act, Equality Act) and internationally (UN Convention on the Rights of Persons with Disabilities).

Discriminatory practices in healthcare will increase the impact of the pandemic. People who may have survived had they been offered healthcare will not survive if refused or pressured to refuse medical treatment. As many of these people will not be taken to hospital, and thus at present in the UK will not be tested, they will not be recorded as having died of COVID-19, only as having died.

The official figures published by Public Health England seem to reflect this. Though the number of cases identified per day is rising ever more steeply, the number of deaths per day is decreasing. This could be attributed to more people being tested and detected as milder cases; another explanation is that some are being refused testing and treatment, and dying unrecorded.

If we wish to minimise the impact of this pandemic, decisions must be made in an evidence-based, non-discriminatory manner. Ageism, ableism, and other prejudices which cloud judgement must be opposed to prevent excess fatalities.

Please could WHO release a statement reminding governments and medical professionals to avoid discrimination when making resource allocation decisions.

Thank you

Fleur Perry

How to say No.

I have a weird skill-set. I like mathematical stuff, techy stuff, and disabled people’s rights. And chocolate.

I used to want to be a chocolate tester for Lindt. Can you imagine getting paid for chomping choccy bunnies? How amazing a job would that be? And then you could meddle in concept design and flavours, and watch your ideas appear on the testing plate, and improve them and make other people happy with chocolate. Now someone has this dream job, but not me: I’m dairy intolerant and thus not qualified.

For my other skills and interests, I get asked every now and again if I’d like to apply for this, or join in with that, or participate in this or comment on that. And usually, I say Yes.

Sometimes, I end up doing something completely different to what I’ve been asked to do, as I’ll find a tangent and follow it, hopefully with useful results. Sometimes, I’ll spend 1 hour reading 1 document and sending 100 words of notes, if that’s all that’s needed.

Sometimes, I get paid. Usually, I don’t, and that’s fine. Stuff for Not-For-Profits, user-led organisations, friend’s projects or just something that doesn’t really fit in a box; sure, I’ll do it for free.

But I won’t perform a statutory function via a public body, and I won’t work for a business for free. To do so would be to devalue my experience and the experience of other disabled people. And possibly let the organisations running these things break the law – minimum wage is minimum wage for a reason. We do the work, we get paid.

This means sometimes I have to say No. I hate saying No.

But by saying No, I’m saying it’s not OK to exploit disabled people. It’s not OK that my talented disabled friends can’t get jobs. It’s not OK to ask me to work for free in a role that a non-disabled person would expect to paid for.

Say it with me: No.

I’m having to say No more often now. Today, once again, I said No.

Edit 21:30 same day

It turned out to be the first paid panel I’ve ever been emailed in the last 5 years that wasn’t to do with trains.

To say I’m surprised is an understatement. This doesn’t happen! And I think that says something about how routine it has become to expect to hear the same words over and over again. It shouldn’t come as a shock to be respected.

 

Have you ever had to say No?

 

Did you vote for this?

Woke up this morning to the election result. I wasn’t staying up ’til midnight – I need my sleep.

A little video presented by Jeremy Vine showed half of the seats of Parliament in blue, about a quarter in red, and the rest looking like a Dr Who scarf.

Looking at the turnout statistics, 67.3% of those registered to vote actually voted. This means that about a third of the electorate didn’t vote. That’s 15 million registered voters who did not mark a ballot paper.

How many people who are eligible to vote are unregistered? I don’t know, but I imagine it’s not a small number.

 

So to the MP who has held or won a seat, I ask: “Are you satisfied with the knowledge that more than a third of your constituency did not support you to get here? If you won by a narrow majority over your rival, are you aware that a majority of your constituency did not give you a vote? How confident are you that you truly speak for those you are employed to represent?”

And I issue a dare: Find out what people who didn’t vote for you want. Find out what people who didn’t vote want. Do what you can to make as many people as possible happy, without destroying the happiness of others.

 

To those who voted, and got the result they desired locally and nationally: Smugness doesn’t suit you, and your job is not over. This is your government, that you voted in and you support. If you genuinely want them to do well, you need to use your voice to make sure that important issues that arise are not ignored just because they weren’t in the manifesto. And if there’s a manifesto promise you backed, it’s up to you to make sure they keep it.

 

To those who voted, but did not get the candidate or government they wanted: Don’t give up. You took part in a political process and your very existence scares those in power. Your job is not over. You think something’s a bad policy? Say so. You think they’ve forgotten something important? Say so! Your voice still matters. It’s up to you to keep being counted.

 

And to those who did not vote, I’m not going to tell you off. It was cold, there were conflicting messages flying around, and you may not have had faith in your candidates.

But I do issue you a dare, too: The next time there’s an election, even a local one, vote. It doesn’t matter if you vote for someone I don’t like; the dare is only to vote.

Get organised right now!
Register to vote: https://www.gov.uk/register-to-vote
Register for a postal vote: https://www.gov.uk/government/publications/apply-for-a-postal-vote
Register for a proxy vote: https://www.gov.uk/government/collections/proxy-voting-application-forms
Do I have faith in this government? No. But I’m a sceptical journalist; I’d have been saying that this morning regardless of the result. So prove me wrong.

Do I have faith in you lot? Yes, weirdly I do. Please prove me right.

Status report from deep in the matrix…

You may have noticed I’ve been a bit quiet lately. There’s 2 reasons for this:

1) Trying to figure out how much I need to use my ventilator during the day. Sometimes I get it right and am dancing round the house getting everything done and even baking 3 types of cookies. Sometimes I get it wrong and have to get the absolute essentials done and then spend hours lying in bed with a hot chocolate and an audiobook read by Benedict Cumberbatch. I know, it’s such a chore. Usually it’s somewhere in the middle, but working on it.

2) Adult Social Care research. When the essentials are done but I’m not flomping into bed yet, I go digging.

A couple of years ago, I did some FOIs, put the results in a large database, and published it online. Dozens of NHS Clinical Commissioning Groups (CCGs) were then told by the Equality and Human Rights Commission (EHRC) that their policies may be unlawful under the Human Rights Act. Their “Choice policies” or similar were placing made-up cost caps on Continuing Healthcare (CHC), with the result that people could have been placed into institutional settings (care homes, nursing homes, …) against their choice and without an assessment of what the impact of taking someone unwillingly away from their home would be. Not Cool, and Not Lawful: we all have the Right to Private and Family Life, and interference with this right has to handled very, very carefully. You can’t just chuck a number on a page and go “That’ll do, savings targets achieved”; you’ve got to treat people like people.

The CCGs decided to change their policies to be consistent with the Human Rights Act, and we all lived happily ever after…

Until Barnet Council started to do something that seemed a bit too similar: https://www.disabilitynewsservice.com/tory-council-set-to-force-disabled-people-into-residential-care-to-cut-costs/

I hope someone living in Barnet drags the council to court over this. If anyone living in Barnet is reading this and would like to, please get in touch with Inclusion Barnet, your friendly neighbourhood Disabled Peoples’ Organisation (DPO).

There are over 100,000 people in England and Wales living in care homes and nursing homes funded to be there by the taxpayer. That’s more than the population of Worcester. Most are funded through their local council’s Adult Social Care budget. A social worker will have conducted an assessment of their care needs, and a decision will have been made that those needs are to be met in a care/nursing home.

Given what we’ve seen with the CCGs, and Barnet Council’s current thinking, are we confident that all other councils are consistently honouring people’s decisions about where they live? Do we trust that the right to independent living is respected? Are we certain that social workers and commissioners up and down the country are doing their job in a lawful manner?

Call me sceptical, but I wanted to check. I’ve got another database on the go, and I’m about halfway through. So far:
– I have 120 full responses
– 72 of which I have read through
– 12 of which I marked “N”: “Not Happy”

I’m awaiting and chasing another 83 responses. If the statistical distribution of dodginess holds, then I’m expecting to mark another ~ 25 as “N”.

Interestingly, this would bring the total “Not Happy” count to about the same as the CCG database a few years ago. Is there a deeper pattern to be found here, looking at the distribution of attitudes towards disabled people and how this impacts on control by statutory bodies? Does the geography overlap, showing that poor practice in one team may have the same cause or be otherwise linked to poor practice in another team? In short, why?

Why do I live in a world where I need to spend most of my week (when I have spare energy) checking that people are doing their jobs right and not pushing people similar to me into institutional settings against their choice, only to find that in some places it really is that bad? All answers to @perry_fleur

More importantly, how do we fix this? Taking things one policy at a time will have an impact. Challenging one dodgy CCG or council at a time will make a difference. But, having read approximately 130,000 words of Choice policy bullsh*t over the past 3 years, I would like something a bit more conclusive.

We need an Independent Living Act.

We need a law we can point to and say “This is my home. This is my life. You are duty-bound to respect that.”

We need a law we can point to and say “Why do you think it’s OK to take that control from me, and place me somewhere I have less control over my day to day life? That’s not OK.”

We need a law we can point to and say “My right to independent living is a Right to Independent Living.”

We need a law we can point to and say “It’s your job to make sure I can live my life the way I choose. It’s your job to take barriers down, not build them.”

We need an Independent Living Act.