The Unrepeatable Figures

We’re more than 6 months into the pandemic. Wave 1 is a not-so-distant memory. Wave 2 is a not-so-distant possibility. It still feels like a situation we can’t control.

Like many disabled people, I’m still choosing to shield. I do this for my own safety, for the safety of those around me, and as a mark of respect for those who have died this year.

Which leads to my usual question: How many?

The ONS data that 59% of Covid-19 deaths were disabled people is shocking, and has received widespread media attention.

Read it here: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/coronaviruscovid19relateddeathsbydisabilitystatusenglandandwales/2marchto14july2020

I have a problem with this data. I don’t think it tells the whole story.

Firstly, it uses data from the 2011 Census to identify disabled people. That’s 9 years ago.

According to the Family Resources Surveys (FRS) https://www.gov.uk/government/collections/family-resources-survey–2 , the number of disabled people has increased from 11.9 million (2011/2012) to 14.1 million. That’s a 16% increase, another 2.2 million disabled people who would not have been identified if they had died of Covid-19.

The overall UK population has also grown in this timespan, so, proportionally, would this change the figures?

Back to the FRS.

In 2011/12, 19% of the UK population were disabled people.

In 2018/19, 21% of the UK population were disabled people.

The proportion of disabled people as a fraction of the overall population has increased. This also points to the quoted figure being an underestimate. Particularly when we note that those living in care/nursing homes were not captured by the FRS, and so any increase here has not been included in the figures above.

I feel confident to say that the data indicates that more than 59% of those who died of Covid-19 between 2 March 2020 and 14 July 2020 in England and Wales were disabled people. That’s more than 27,000 people.

Of these, how many lived in care/nursing homes?

Sadly, the data isn’t set up for an accurate comparison. Some of those living in care/nursing homes may not have been recorded as disabled people on the 2011 Census. The timespans of the datasets I’m comparing are different.

… but it’s good enough for a back of the envelope calculation.

Let’s start here: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/articles/deathsinvolvingcovid19inthecaresectorenglandandwales/deathsoccurringupto12june2020andregisteredupto20june2020provisional

Up to 12 June 2020, 19,394 care/nursing home residents died of confirmed or suspected coronavirus.

From memory, approximately 400,000 people live in care/nursing homes. That means that 1 in 20 (5%) of that population died during Wave 1.

Above, I stated that ONS data shows 27,000 deaths of disabled people. And here I have around 20,000 deaths of those living in care/nursing homes, within a shorter timespan, as that data goes to the middle of June instead of July.

From this, we can say that of disabled people who died of coronavirus, more than 74% lived in care/nursing homes. That’s 3/4.

There’ll be another blog soon on how and why we can avoid repeating these unrepeatable figures. For now, can we all agree that we cannot continue as we are if these are the consequences?

Hospitals Failing to Follow Updated NHS England Guidance

In the space of a week and a half, I’ve been made aware of 4 hospitals unlawfully refusing PAs, carers, and care/support workers of disabled people. Realistically, it’s not going to be just those 4; there will be others.

That’s not good enough. Dozens of you joined in to get the NHS England visitor guidance changed to make sure this didn’t happen (special thanks to Mark Williams, BRIL, DPAC, Fry Law, Not Dead Yet, and various Facebook groups).

A victory isn’t a victory if it’s going to be ignored like this. There’s more to do.

I’ve FOI’d NHS England to ask them how they communicated the updated guidance to hospitals, and let them know that it’s not being followed. They need to act.

Somehow, I don’t trust that NHS England are going to get every hospital into line as quickly as is needed. Leaving it up to them isn’t the only way forward.

I need your help again. There are almost 500 hospitals in England alone. If I rang every single one, this would take me 3 weeks. If they don’t argue. Adding in arguing, it could take 3 months!

Instead, could everyone reading this check the visitors policy of their nearest hospital and send a quick email if it’s not in line with current guidance. I’ve made a template you could use.

Thanks everyone! And feel free to name and shame hospitals ignoring guidance on twitter! Or praise those who listen and make a change! Tag me in please perry_fleur

Wishing victory to all!

Template email – Change your hospital’s Visitor policy

To whom it may concern

Your visitors policy is not in line with current guidance.

NHS England’s visitor guidance was changed to permit access to “people who are in attendance to support the needs of the patient, for example a familiar carer/supporter/personal assistant”.

Here is the guidance: https://www.england.nhs.uk/coronavirus/publication/visitor-guidance/

Following campaigning by dozens of disabled activists, this change was made to ensure that disabled people were not put at unnecessary risk, and to ensure that hospitals met their legal obligations under both the Equality Act 2010 and the Human Rights Act 1998.

[Add something about why you need to be accompanied by someone who knows your needs when you go to hospital]

Please change your policy to respect the needs and rights of disabled people and ensure that your staff are able to carry out their roles in a lawful manner.

Yours faithfully

[Your name]

10 Things I’m Proud of this Disability Pride Month

5 years ago, the Mayor of New York decided that July would be Disability Pride Month, in celebration of the Americans with Disabilities Act (ADA). There’s marches, singing, storytelling, and a lot of awareness-raising and mass advocacy. People are sharing why they’re proud as disabled people, and what they really want to say to the world.

 

I think it’s brilliant. There’s online events being run by DDPOs across the US and beyond, and gradually it’s becoming more recognised all over the world, including in the UK. We had the Disability Discrimination Act (DDA) instead of the ADA, but we can agree that anti-discrimination legislation, activism, and self-advocacy have changed the world hugely over the past generation, and that this is cause for celebration.

 

There’s more to do, and recent events have exposed deep issues which need work urgently. Looking back at what disabled people have already achieved, I’m certain we can smash those barriers. In the meantime, let’s take time (a month, a week, a day, an hour…) to recharge, be proud, and have a global party.

 

What I’m proud of:

 

Peer support – Professional not listening? Equipment broke? Want to throw something but don’t have the arm strength? Online peer support has grown hugely through social media, and though much face-to-face peer support has been paused during the pandemic, it’ll be back in full force wherever and whenever people can connect again. There’s always someone who knows what that’s like, or what to say, or just when to hand you something non-breakable to run over (wheelchair peeps – bubblewrap).

 

Disability culture – We have a shared history and shared dreams, and the ways we express those are fabulous. We have music, full of angst and grief and hope and joy, beautifully crafted and suitable to be performed anywhere, at anytime. We have art, satirising current issues and misconceptions or showing us as we see ourselves, not as others are taught to see. We have humour, the best of which is dark and shameless served with self-deprecation, irony, and rebellious glee.

 

Our history – The rights I grew up with were being fought for by activists for decades before I was old enough to understand, or, in some cases, even born. People were handcuffing themselves to buses as I was learning to sing “The Wheels on the Bus”. People pushed and pushed to get the legislation in place so that I could live, love, learn, work, travel and enjoy the world we live in. My thanks go to UPIAS, DAN, the BCODP, and the thousands of individual activists, some of whom I’ve been honoured to meet, and many who’s names have been lost.

 

Our future – I don’t doubt that every year will see new issues highlighted in new ways, with new solutions being tried and new victories being won. I’m excited to know what happens next, and to join in side by side with others with the same dreams.

 

Myself – I’ve done things I’m proud of. I’ve done things I was told wouldn’t be possible. I’ve spoken to people who I was told wouldn’t listen, or wouldn’t care, or wouldn’t take time to even open the door. I’ve been to places that were not made for me, and done the best I could. That’s all I can ask of anyone.

 

Our community – You know who you are! The people encouraging each other, sharing information and ideas, and generally making things happen: I salute you. We fought for each other during the pandemic. We fought for each other before, and will continue to after the world returns to “normality”, whatever that may be. We’re not individuals demanding for nothing more than our own rights; we hit harder when we fight together.

 

Our allies – We don’t always fight alone. There a people who take the time to understand our experiences, take on board what we say, and use their voices to make sure ours get heard.

 

Our allyship – When we get to a discussion table or decision-making panel, we have the chance to speak not just for ourselves, but for others experiencing prejudice, discrimination and exclusion. We owe it to ourselves and others to learn about what’s going on in the world around us and work towards the kind of world we all deserve to live in. Whether you’re attending a #BlackLivesMatter protest, talking to housing teams about the increased risk of homelessness for young LGBTQ+ people, or signing a petition asking for more action on domestic abuse, our allyship counts.

 

Our flag – Created by Ann Magill, it’s bright, instantly recognisable, and filled with meaning.

The black field represents mourning and anger at death and abuse resulting from ableism. The five colours represent different groups of people and impairments: blue = mental health; yellow/gold = neurodivergence; white = invisible disabilities and those without a diagnosis; red = physical impairment; and green = sensory impairment. The parallel lines describe our parallel experiences, and the zigzags are us going around barriers.

I love it so much I put it on a t-shirt.

IMG_20200707_210308
Black t-shirt hanging on a wooden door. The 5 zigzag lines of the Disability Pride Flag have been painted on, extending from the right shoulder to the bottom left of the t-shirt.

 

Our self-determination – I don’t mean our individual ability to pick a metaphorical (or literal) mountain and go climb it. I mean that the language and narrative around disabled people is continually being rewritten by us. We decide who we are, which issues are important and how they are to be framed and resolved. We take charge wherever we can of the things that impact us. There are barriers to doing that, and people who seem to actively ignore our ownership of our perspectives, but that doesn’t take them away. We say it how it is.

 

What are you proud of?

Accessible Housing is a Must for a Sustainable Economic Recovery

TLDR: The government can’t afford not to invest in accessible housing and adaptations. All new housing needs to Category 2 at minimum. Even with this, we will not meet the need with building alone, and must also invest in adaptations (DFGs), making homes decent, and reducing barriers to moving to an accessible property. Every accessible home is a sound investment.

 

Though there are still hundreds of people dying of Covid-19 every week, the word “recovery” is creeping back in to our vocabulary. People are sharing stories of their battle with the virus, or the pressures of lockdown, or planning to restart work or their small business. We’re slowly trying to figure out what the new “normal” will be like.

Economic recovery is being offered by the government as a symbol of hope. ‘It’ll all be OK, as we’re going to build houses!’ – the news seems to say. Well, we do need more housing, but what we need even more is accessible housing.

The shortage of accessible housing, also known as the accessible housing crisis, affects 1.8 million people in the UK. That’s 1.8 million people living in homes that are unsuitable or unsafe for them, which are unnecessarily harming their health and wellbeing. That’s people who couldn’t leave their homes even when lockdown ended. That’s parents who can’t tuck their kids in at night as the bedrooms are upstairs. That’s people “making do” with something almost impossible.

If you’re a money-watcher, this follows the rule that harm costs. The lack of accessible housing costs the NHS a lot in preventable GP consultations (Leonard Cheshire Disability, 2015), hospital admissions and delayed discharges. It contributes to the employment gap and education gap between disabled people and peers. It increases social care costs, and contributes to social isolation/exclusion, and reinforces negative stereotypes of us “not fitting”. Moves to care homes are often the result of unsuitable housing that can’t be adapted and no longer matches a person’s needs, which has both short term and long-term costs to social care, as well as exposing the person to further physical and mental health risks.

The proposed surge in house-building is a great opportunity to address the situation, and one that the government can’t afford to miss.

 

How much new housing needs to be accessible?

At the moment, local authorities are duty-bound to consider the need to calculate the proportion of accessible housing needed and state it in their Local Plan. If they don’t, they may be leaving themselves open to legal action by disabled people and DDPOs.

However, local data on disabled people’s housing needs isn’t easy to put together. There’s little national guidance on how to do so, and it’s not something that many councils would have experience of doing in-house. But it’s not impossible, and, if any local authority is struggling, I’d gladly do the estimates for free.

Right now, many Local Plans do not state a proportion of accessible housing to be built in their area. They seem not to have bothered, and this will only lead to a greater shortage in accessible housing. Ignoring a solvable problem isn’t going to make it go away.

However, instead of placing a demand on local authorities which they seem to be finding difficult to meet, there is a neater solution.

 

National data is already available, and demonstrates that the lack of accessible housing is so widespread that local variation seems to become statistically negligible. We need more accessible housing everywhere, now.

Approximately 30,000 homes are built in the UK every year (https://www.gov.uk/government/statistical-data-sets/live-tables-on-house-building)

Let’s say we get ambitious, increase our building rate, and build 800,000 homes in the next 20 years. Let’s say we build all of them to a minimum of Category 2. This wouldn’t even solve half of the accessible housing shortage, and that’s without considering population growth. If we count that in, we can reduce the accessible housing shortage by about a quarter through building alone.

[Anyone who would like the full calculation, please comment or contact me and I’ll provide it separately.]

 

Does this mean that accessible housing is a lost cause? No!

Every house built will have a person or family living in it, and every one of those people will have their lives shaped by how well their house fits them. 800,000 accessible homes means 800,000+ people not put at risk, not socially excluded by the newly built environment, and not “making do” but “doing their thing”. That’s worth it.

 

My suggestions on what needs to happen in national policy:

– Build all new dwellings to a minimum of Category 2 (adaptable), unless it can be proven that a given site is unsuitable for this, in which case as many accessible features as possible are to be maintained.

– Build the maximum number of Category 3 (wheelchair accessible) dwellings viable in a given area, and consider ways to improve viability.

 

Building accessible housing is one key part of the solution. There are other opportunities to be taken alongside this, including:

– Increasing funding for and public knowledge about Disabled Facilities Grants. By improving the accessibility of the housing stock we already have to match the needs of the people living within it where possible, we can further decrease the shortage of accessible housing. By setting funding to an annual level based on need (not demand dampened by lack of information), this will also create sustainable jobs. Also, the social care savings generated per pound spent on DFGs are up to ~£7 per year (Isle of Wight Council); money watchers, take note.

– Remove barriers to moving into accessible properties. Choice Based Lettings systems do not usually allow accessible housing to be held for a short period to allow the right tenant to apply. Social housing could be better managed and advertised to make sure that accessible properties are more readily available to those with access needs. Also, minimum residency requirements can leave people unable to move to an accessible home and at avoidable risk for years, and arbitrary age requirements placed on accessible housing lock younger disabled people out of the accessible housing sector, which may be breaches of legislation.

– Clear information and guidance around the HOLD scheme, discretionary housing payments, and home improvement grants offered by local authorities would improve access to, maintenance of, and retention of safe and suitable housing.

– Accessible housing registers, better informed estate agents and landlords, and advice for consumers on how to look for a home that will meet their changing needs will also help make sure that those seeking a home can find the right property.

– Support to prevent and resolve homelessness must be strengthened. Disabled people are disproportionately affected by homelessness, and once again, effective support is cheaper and avoids extended periods of risk and harm than ignoring the issue. Making support available at an early stage can prevent someone losing their tenancy, and Housing First approaches have been shown to be effective.

 

Accessible housing, everywhere, now, please.

My Biggest Protection Against Covid-19? My Front Door

I live in my own home because I fought for it, and was lucky enough to win. I live in an area which, though it has an accessible housing shortage, has more new builds than the majority of the country. I live in an area that doesn’t have cost-caps on care which (sometimes unlawfully) push people out of Independent Living into institutional settings against their choice. And I had information on my rights. I was lucky. When I refused to move into a care home, they respected my choice, eventually.

 

Why did I want this? I didn’t know about the physical and mental health risks associated with some institutional care settings at that point. I didn’t know that some care homes ran on minimal staff whilst collecting 7% returns for investors. I didn’t know most of what I know now.

 

I knew that other people telling me what to eat, when to go to bed, when to take medication and to use this equipment in this way at this time for this long was not going to work well for me, and that’s what I thought it would be like. No: My life, my body, my choices.

 

I wanted Independent Living because I wanted to be doing my own thing in my own space. [To say “in charge of my own destiny” sounds a bit too Marvel, but it’s a closer fit for the feeling I’m struggling to express here.]

 

And I am 😊

 

As someone with weak lung muscles, I’m shielding. I’ve been instructed by Government to avoid getting ill, by never getting closer than 2 meters to anyone, and even then limiting that interaction to one person. This doesn’t really work for me as someone who needs 24/7 care, and there’s exceptions in the instructions for care workers, but the message is clear: Avoid people. Especially avoid ill people.

 

So my front door is the portal through which only the apparently uninfected and essential may enter. If I hear a cough or see someone short of breath, I have the right to do a Gandalf impression: “You shall not pass!”

 

And this is shielding done right. This is me in charge of my own health and how it’s protected. This is me taking care of myself and those around me because I value my health and the health of those around me. My little lungs need to be protected, and that’s my job before anyone else’s.

 

In a care home, this is not the case. I’m not talking about sheltered housing or supported living flats or any other arrangement where a person has a suite of rooms of their own that allow for firm defence of boundaries. I’m talking of small bedrooms and communal lounges and showers, dozens of shielders in one small building.

 

All the estimates I’ve seen suggest that about half or more of the deaths from Covid-19 have people living in care homes. That doesn’t include the staff who work there. I’ve asked ONS for more data, and will share it when I have it.

 

Care home managers and staff have a duty of care. It’s their job to do a Gandalf impression so that someone else doesn’t have to. Unlike me, they have regular training in infection control. In theory, according to some professionals I’ve met, they can do this job better than I can.

 

But that’s not always true.

 

Problem 2 – The division between “us” and “them”

 

To some, the care home headlines read like this: “Vulnerable People Die”.

 

Sad, but inevitably tragic. What an awful world we live in, if only things were different. Ah well, never mind. We’ll be OK, at least.

 

That’s not how I read those headlines. I read them as “Thousands of Disabled People Died as a Result of Failures by NHS and Care Home Managers”

 

Many of these deaths were preventable. People made choices against the best interests of the wellbeing of those they were employed to protect. I am angry about this. We can change what happens next.

 

To anyone who’s replying to the above with “I’m sure they did their best”, you may want to make a strong cup of tea and read and watch the below.

 

ITV News, 28/5/2020, ‘ITV News reveals plans to discharge Covid-19 patients into care homes’: https://www.itv.com/news/2020-05-28/itv-news-reveals-plans-to-discharge-covid-19-patients-into-care-homes-nhs-coronavirus/?fbclid=IwAR39TPYQDgv8CXW1TzPAFqbVglXUExL4sHlYYn4-f3vB7ONKLo7c3SnycAk

 

I’m not going to point out every detail I saw in the video which raised alarm bells, but I will mention just how uncomfortable I am with the “Hello Darling!” at the beginning of the video. That’s one for a whole other blog.

 

NHS commissioners block booked spaces in some care homes, and the care homes accepted those bookings. Those people made decisions, and they will have to answer for them.

 

Some have cited financial pressure as a motivation for making that decision, and that goes back to Problem 1, which was the assumption that cost cutting and cost-effectiveness are the same thing (not true). Also mentioned was the need to reduce strain on the NHS, which is not going to be achieved by increasing exposure of “vulnerable” people.

 

How much would you have to pay me to allow someone with a positive test result for Covid-19 to enter my home? I couldn’t put a number on that. There are very few circumstances in which I would. Certainly nobody could pressure me into doing that.

 

I value my safety in a different way to how someone else might value it on my behalf. If your priority is business first, safety second, then there’s a problem. And if you’re an NHS manager pressuring people to do that, then that’s also a problem.

 

 

What’s next?

 

A legal case is being pursued by Cathy Gardner following the death of her father, Michael Gibson, despite governmental assurance that there would be a protective ring around care homes. The letter before action highlights the decisions made failed to protect the Right to Life of those living in care homes.

 

Watch the video; Sky News, 3/6/2020, ‘The daughter of an 88-year-old man who died in a care home is demanding the Health Secretary retract his claim that ‘a protective ring’ was thrown around care homes or she will take him to court.’, https://www.youtube.com/watch?v=IHHpAGKkLjU&fbclid=IwAR1lYJ2VjsPK1tSWErF7N2vqWxO-yNgkIkssEJ6U6m6HpeGiKIDiiy0Ldkw

 

I hope it is successful, and that others will join in.

 

The best outcome of the legal case that I can foresee is a few care home managers and NHS managers losing their jobs, the Government saying their policy was clear (was it, really?) and that it was a tragedy in a time of tragedy, and a few infection control handbooks being rewritten.

 

I don’t think that’s good enough. I don’t think that’s going to be enough to save lives the next time around, or to break the separation between them and us. I don’t think that that’s the best we can do.

 

We need to find ways of giving back power to those with health and social care needs.

 

At the moment, people living in care homes do not have the right to a tenancy agreement, and the protections within one. Moving between care homes must go through the funding council, as Direct Payments aren’t used for care homes. And moving out of a care home, putting the care home sector in competition with Independent Living, has a range of removable barriers that need sorting, now.

 

Let’s get to work.

To NHS England: Why Disabled People are “Key Stakeholders”

TLDR: If it affects disabled people, talk to disabled people. Sign our petition asking NHS England to do that, here: https://www.change.org/p/the-nhs-and-uk-government-must-consult-with-disabled-people-when-planning-nhs-and-health-policies?recruiter=false&utm_source=share_petition&utm_medium=twitter&utm_campaign=psf_combo_share_initial&recruited_by_id=ca2b0ff0-ac12-11ea-ba2a-3f7d7ce5b3fb

You may remember me going on about dangerous and discriminatory visitor guidance. There was a document which had the effect of blocking disabled people from being accompanied by PAs and others who understand their needs. It caused a lot of unnecessary drama for a lot of disabled people and NHS staff. It was a bad idea.

And so I wrote to them, as did Mark Williams (Hi Mark!), and then we each asked lawyers to write to them (Hi Chris & Catherine! Hi Polly!) highlighting the Equality Act and Human Rights Act issues, and then they agreed to change the guidance. And they did.

Mission accomplished, you may think, but no.

The new guidance, available here, has a few holes. For a start, it doesn’t mention disabled people at all.

It doesn’t mention our rights. It uses terms I can’t define: anyone know what supporter was meant to mean? Did they mean support worker, or “a person who provides support”, or someone with a bright stripy scarf yelling supportive things? It leaves the ultimate decision to the hospital itself, but doesn’t give them any pointers on what to consider. It doesn’t talk about how to make sure PAs and carers are treated as part of the team, including being given access to PPE.

In short, I’m disappointed. I’m glad it was rewritten, and I’m already getting positive reports – I know someone who needed a routine appointment and was able to be accompanied last week (Hi J!). But do I think there will still be problems? Yes, I do.

In a letter, NHS England confirmed to me that they would be inviting input form “key stakeholders”. I don’t know who they were, but I don’t think they spoke with many DDPOs. Let me explain why I’m unimpressed by this:

In response to letters from disabled people, sent on behalf of themselves as disabled people and other disabled people, which highlighted the impacts of the guidance on disabled people, they rewrote the guidance to reduce the harm to disabled people, and to avoid disabled people from taking further legal action to defend their rights and the rights of other disabled people as disabled people.

If that doesn’t make disabled people “key stakeholders”, what does?

And if they’d consulted with disabled people and DDPOs from the beginning, that dangerous and discriminatory guidance wouldn’t have existed in the first place. And if all of the NHS did this, I wouldn’t have to spend time reading documents that say “suffering with”, news stories highlighting misuse of Do Not Resuscitate directives, or that awful Clinical Frailty Scoring which was recommended as the basis for who gets treatment in the event of a shortage, which included care needs as a factor and even had a little picture of a wheelchair user next to the one considered on the borderline of unworthy.

Thanks to the efforts of Baroness Jane Campbell (Hi Jane!) and others (Hi Doug!), these policies and practices are being rewritten, rolled back, or challenged. NHS England have even issued a statement, which says:

“Every individual should be provided with ongoing opportunities to participate in decisions that affect them.”

Individual voices must be heard and respected: Nothing about me without me, you could say.

I think we need to go one step further. We also need our collective voices to be heard and respected: Nothing about us without us.

We’ve started a petition, with the support of Disability Union (Hi George!) and BRIL (Hi Mike!), asking for NHS to consult with disabled people. Please sign it and share it with everyone you know!: https://www.change.org/p/the-nhs-and-uk-government-must-consult-with-disabled-people-when-planning-nhs-and-health-policies?recruiter=false&utm_source=share_petition&utm_medium=twitter&utm_campaign=psf_combo_share_initial&recruited_by_id=ca2b0ff0-ac12-11ea-ba2a-3f7d7ce5b3fb

We trust you with our lives, because we have to. If you want to rebuild that trust: talk to us. That’s all we’re asking, just talk to us.

 

PS: You may wonder why I’m saying hi to everyone.

  1. I’ve been shielding for ages, and it’s starting to show.
  2. These people are great, and deserve recognition for their actions.

 

 

Institutionalisation is an avoidable public health disaster

I first read the words “communal pneumonia”, referring to the rapid spread of respiratory infections in care homes, about 5 years ago. I don’t remember where, but I remember shuddering at the thought and swearing I’d never put myself at that kind of risk. My lung muscles are weak, and so I avoid any unnecessary hazards I can.

 

Flu statistics also draw a link between care homes and respiratory infection spread. In a 2019 publication from Public Health England, it states that of outbreaks in closed settings, 69.6% occurred in care homes.

https://www.gov.uk/government/news/uk-flu-levels-according-to-phe-statistics-2019-to-2020

 

This is for a virus that we have vaccines against. We know how it works and who is at risk, and yet we still place those most at risk together, in an environment that puts them at further risk.

 

Norovirus: Outbreaks are common in care homes, according to Public Health England. Is anyone else starting to notice the pattern yet?

https://www.gov.uk/government/collections/norovirus-guidance-data-and-analysis

 

Now onto coronavirus. On the 13th May, it was reported that 22,000 people living in care homes may have died of Covid-19 in England and Wales.

https://www.newstatesman.com/2020/05/care-home-death-toll-could-be-22000-more-double-official-figure-academics-say

 

That’s about 1 in 20 of those living in care homes. These figures are now more than three weeks old, and more will have died. On that same date, Public Health England reported a total of 33,186 Covid-19 deaths in the UK.

https://coronavirus.data.gov.uk/?_ga=2.75219218.1429187130.1591174578-969766256.1581161768

 

Without going into the detail of critiquing the data, we can say that a huge majority of these deaths were people living in care homes. All the estimates I’ve seen that I can recall say that more than 50% of Covid-19 deaths are or will be care home residents. Logically, it follows that a proportion of the remainder were health and social care staff working in those care homes, and then those who interacted with them, including nurses treating those infected there in hospital.

 

If you were to map where and how people were infected – as the government hopes to do with Track and Trace – and draw lines between the carrier and the newly infected, you’d see a network, like a zoomed in image of the human brain or an artist’s visualisation of social media.

 

Care homes would be nodes, dots with many lines radiating from them, which lead on to others, and so on. Track and Trace may not show this well, as many who live in care homes may not own a smartphone.

 

To tackle this pandemic and mitigate future disease outbreaks, we need solve the problems underpinning institutionalisation.

 

Problem 1 – it’s “the norm” because it’s “cheaper” (Spoiler alert: it’s not!)

 

At various points in the past few years, I’ve spent large chunks of time going through NHS Continuing Healthcare and Adult Social Care policies seeking evidence of “warehousing”, people being stored like boxes in the least expensive place, irrespective of their wishes as a person. And yes, it happens, and yes, it probably is a breach of the Human Rights Act.

 

With assistance from the Equality and Human Rights Commission and others, some of these policies have been changed. But it’s what I call a Whack-A-Mole situation: you get one area to comply with legislation and listen to what people want and then suddenly there’s another one to attend to.

 

Even where policies allow for Independent Living, people often have to push and push for months, or even years, to get a workable care package agreed that means they can stay in their own home.

 

“Funding” is the usual reply, and I squirm as I wonder how much the price on my head is. In one memorable policy, the price difference between Independent Living and someone being placed in a care home that was considered too much was that of a second hand Ford Fiesta. I’m sure the policy makers would consider their own liberty worth more than that, and so do I.

 

But how much has institutionalisation cost in preventable infections alone? How many flu and norovirus cases could have been prevented? How much does that cost? (I’d say it’s multiple millions)

 

How many coronavirus cases could have been prevented? How much has that cost? (I’d say it’s a hefty number of billions)

 

How much does it save when you listen to people and don’t put them at avoidable risk?

 

Institutionalisation needs to not be “the norm”. Independent Living is a solution that seems to working. https://www.disabilitynewsservice.com/coronavirus-control-over-support-is-helping-keep-disabled-people-safe-evidence-suggests/

 

Deinstitutionalisation now, please.

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.