How to get help?

Something that comes up time and again is how to get help with long term illness/disability. I want to try and answer the following questions. What to do after:

  1. You are taken ill that leads to long term limitations.
  2. You have an accident that leads to long term illness.
  3. You have a relative who is limited long term to their house.
  4. Gradually a condition you or a family member has deteriorates. Leaving you or them more limited long-term.

In all these situations where do you turn for help?

We tend to think that the medical profession are the answer to medical questions. In theory, they should direct you to the right place. In my experience, that doesn’t always happen. This blog is not perfect, I cannot accept responsibility for your care needs. This is only a rough pointer. But I hope it may help direct you to help. It only applies to England and is only for over 18-year-olds (adults)

Who you gonna call?

In England and that is all I know about. You contact your local Adult Social Services. Look online or in the directory, it may be listed as: ‘Child and Adult Services.’ If so, look for the section dealing with adults. There will be a hub or central number of some sort. Get through to the main number and say something like this:

I would like a care assessment for (name of person needing care)

If someone is providing care long term (i.e. family member) then request it for them too.

Explain basic details of why the assessment is needed. This phone call is not where you give every detail.

What happens next?

They should send out, at the very least, a social worker. I know, we all think of social workers as the people sent out in socially deprived areas or to kids being abused. But, they also have a role supporting adults needing care. They are your first point of contact in this situation.

Let me just make a quick aside here: If you have a medical emergency phone 999. If you have a medical need contact your GP. This blog is only talking about ongoing care needs after a medical professional has dealt with your acute needs.

Depending on your level of need. You should also get other people sent out. I would think at the least an OT (occupational therapist) nothing to do with work. They look at moving and handling. It is the OT who looks at things like specialist equipment to help you manage around the home. In some areas that includes profiling beds. They will be the one to check your home is safe and suitable. So, if you are living somewhere that is no longer suitable. The OT is the person who can assess that for you. Unfortunately moving somewhere more  suitable is not so easy.

If your needs are mainly medical, highly complex and variable. Then the social worker should look at a CHC (continuing healthcare) assessment. You can request this if you feel your needs are complex, variable and mainly medical. The local authority is really set-up to deal with less complex health care needs. You can always seek advice or request an advocate if you think that you are not getting the correct level of help.

Different areas have varying approaches in the way they deal with district nurses and physiotherapists in the community. So I cannot give you any hard and fast answers on that. Ultimately it will depend on your needs. But your start point will still be adult social care.

A note about Wheelchairs

A specialist team of OT’s and other health professionals deal with wheelchairs and that normally needs a GP referral. In most areas you would need to have virtually no mobility to get an NHS wheelchair. But if you are struggling to mobilise, ask your GP about it.

Then what?

After your various assessments, a care package (if needed and agreed) will be arranged. How costs on this work, are a whole other area. I suggest googling that specifically. Or seeking advice on that. But in essence, if you have no savings and are on benefits, you won’t pay for care. There is a sliding scale after that.

To note

Care provision in the UK at the moment is limited. Too many people needing care and too few carers. Hopefully that will improve. Some of that is due to Covid and some post-Brexit.

Next Stop Hollywood

I’m not sure if I am getting carried away. It would be most unlike me. We have already appeared in a national professional magazine (Inside Housing), The Daily Mail, two local newspapers (Hartlepool Mail & Hartlepool Life) and now we are going to be on ITV national news. They filmed today and the piece goes out in the next week or two. Is it really a big step to assume the BBC will call next. After all they have a few topical news programmes. Then the obvious next step is a Hollywood producer. It’s a natural and obvious progression. Not at all fanciful.

With that in mind and I think I’ve proven it as a possibility. I have started thinking who will play me in a Hollywood Blockbuster. Because it will be Blockbuster, not some B movie. Tom Cruise, seems the obvious lookalike. We are almost twins. True, he is aging less well than me. But, I will overlook that. Kate Winslet is obvious to play Mary.

Given the way Hollywood writers distort facts, my story will change. I will end up as the victim of a motorcycle accident. That would suit Tom Cruise. He is always whizzing around on fast motorbikes without helmets or suitable leathers. No doubt he/me will look very cool in a wheelchair. Yes, I can picture that. Mind you, I already look cool in a wheelchair.

I’m thinking of titles: ‘Top chair,’ ‘Access impossible,’ ‘Access impossible 2,’ ‘Access impossible 3,’ ‘AI4,’ ‘A few good wheelchairs,’ ‘Jack can’t Reach it.’ I’m sure you can join in the ideas.

What do you think? Am I being overly optimistic? Of course not. I am already writing scripts in preparation. It will save time later.

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Technology Fail

Early this morning someone banged on the front door. Mary had not yet woken up. No problem, we have a Ring doorbell. I picked up my telephone and pressed the app. Nothing happened! I don’t panic easily. I grabbed my tablet computer and pressed the app on that… oh, you’re ahead of me. Well, you’re wrong. The Ring app started… eventually. By which time the people by the door had decided to press the doorbell. The app showed them on my tablet. I pressed the microphone button… nothing happened.

What to do? My bedroom is at the front of the house. Over the front door. My bed is next to the window. You’re right. I used my Echo Alexa device to call Mary. That didn’t work. I found out later that her Alexa was turned down to a low volume and she had slept poorly.

Now what? All my technology had failed. I rely on it with my disability. What other way could I contact the people outside my window? A brainwave hit me. I wound up my blind, opened the window and looked out of it. The inconsiderate door knockers were by their van. I called out, ‘did you knock on our door?’ I’m quick like that. ‘Yes,’ they called back. ‘We’re here to sort the leaky guttering.’ This is sounding like a soap.

Who would have guessed that calling out of an open window could work? It never occurred to me before. All you baby boomers, of which I am obviously not one, keep your thoughts to yourself. If you are Gen X, you can join them. I know all you millennials and gen Zeds will be fully behind me. Technology was the only way to answer a door. None of this old fashioned shouting out of windows. I almost felt like a cave man.

Oh well, hopefully Ring service will soon be restored.

(I always have to add with my blogs that I am joking. My tongue is well and truly in my cheek. Yes it happened. But I am not serious in my comments. Otherwise people get so stressed out in the comments.)

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Capacity Overload

There are times in life we all reach our limit. Moments when we say, ‘enough is enough.’ That point when we can go no farther. But… I never expected it to be part way through a McDonald’s meal. Not in my wildest dream did I imagine that.

Picture the scene. A Big Mac and fries. Helping Mary finish her chicken wrap. Plus, here’s the kicker. They had accidentally added an extra Big Mac in the bag. Obviously too late to go back and return it. Besides, last time we got a McDonald’s they made a mistake. This is obviously a belated apology. Part way through my part of the chicken wrap. Sorry the McChicken wrap. Is that the right term? I stopped. I was full up.

I have paused here for you all to faint, shout out, run around. Go to the foot of your stairs. Not eat all of a McDonald’s! What has happened to the world? Doesn’t your stomach have a special compartment for junk food? Sorry McD. It’s right next to the pudding shelf, isn’t it? That place that always has room for a pudding, even after a big meal.

But no! I was full up. Am I ill? Well obviously yes. I mean extra ill. Something has gone very wrong. Normal service will be resumed as soon as possible.

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Ten tips and hints

These are a list of ten things I have found make life easier when you are mobility limited:

1/ Litter picker/grab sticks. I can’t over state how useful I find these. Do look for ones that have a decent grip. They are still limited by two things, your strength, and the weight of what you can pick up. But they are great to get smaller things that are out of your reach. However much it may sound fun, it’s no fun having to keep asking people to fetch everything for you. If you can grab what is just out of reach, that is really great. I have a piece of string on the top of mine so it can hook onto another thing I have lots of, hooks.

One example, this one folds:
https://www.amazon.co.uk/gp/product/B083QY1LXP/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

2/ Hooks, I have several Velcro strapped hooks around my bed and on the wheelchair. As mentioned in the 1st point, a litter picker is on one.  There are so many available. I have only shown one.

3/ Panniers, I have several of these, all different types. Two on my bed and two on the wheelchair. They hold medicine, remotes, snacks, papers, magazines, pens etc.

4/ Sleep headphones, these are a soft headband with built in headphones. I can lie down and listen to music or watch films. Mine are wireless ones, they last a few hours per charge.

These are the ones I use:
https://www.amazon.co.uk/gp/product/B095NRZGPB/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

5/ Multi USB charger unit, this is most useful in nursing homes, but also good at home. As I have a lot of technology it enables me to charge many USB and Apple devices at the same time, from one 3 pin UK plug. They have different outputs.

The one I have no longer exists. Here is one of many now available:
https://www.amazon.co.uk/Charger-IWAVION-Charging-Adapter-Samsung-White/dp/B08F7RFV39/ref=sr_1_2_sspa?crid=2AER9JZ0D9UIQ&keywords=multi+usb+charger&qid=1661403113&sprefix=multi+usb%2Caps%2C61&sr=8-2-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzSDlERks3VzE0WklEJmVuY3J5cHRlZElkPUEwNDY5ODY0MVhFR0U0QjhVNFowViZlbmNyeXB0ZWRBZElkPUExMDMxMjQ2MkNVWlE1QU9QSDA0MiZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=

6/ A computer tablet stand, I have a heavy based, goose necked stand and it is so useful. I can easily view or operate my tablet without having to hold it or balance it on my knee. But there are many variants. Ones that attach to the bed or that sit across your knee.

This looks the nearest to the one I have (no longer available):
https://www.amazon.co.uk/dp/B08S791TMP/ref=sspa_dk_detail_2?ie=UTF8&psc=1&pd_rd_i=&pd_rd_i=B08S791TMPp13NParams&s=computers&sp_csd=d2lkZ2V0TmFtZT1zcF9kZXRhaWw

7/ Water bottle holders, I have had to try several of these to find the one that works on my wheelchair as every chair is different.

Mine is similar to this:
https://www.amazon.co.uk/AOBETAK-Rotation-Bicycles-Mountain-Wheelchair/dp/B07F32NWZ9/ref=sr_1_9?crid=2RJE9YB8RH6ND&keywords=bottle+holder+bike&qid=1661403419&sprefix=bottle+holder%2Caps%2C61&sr=8-9

8/ A Trabasac tray. The reason being that it doubles as a bag. Plus, it has a variety of clips so that it can attach to my wheelchair. I find my lap is not level, except when my chair is reclined. So, the tray is only secure when clipped. The edges of the tray are raised so that things stay on it.

This is the Trabasac Curve. But there are a variety of sizes/types. Look at them all if you are interested:
https://www.amazon.co.uk/Trabasack-Curve-Wheelchair-Inclusive-Universal/dp/B00BAQXNCK/ref=d_pd_sbs_sccl_2_1/257-6152039-0943466?pd_rd_w=7jAcj&content-id=amzn1.sym.7207abe0-2196-4238-95e4-697dc8e1fcc1&pf_rd_p=7207abe0-2196-4238-95e4-697dc8e1fcc1&pf_rd_r=6R47J47PPKGJKRB87A9S&pd_rd_wg=AOUG6&pd_rd_r=38f65032-b80d-449b-947b-27c85adaab3c&pd_rd_i=B00BAQXNCK&psc=1

9/ A metal urine bottle hanger. I am in my profiling bed a lot. So I need urine bottles to hand. Having them safe and secure on a hanger is brilliant.

This is the one I use:
https://www.amazon.co.uk/URINE-BOTTLE-HOLDER-Urinal-carrier/dp/B01CR5CCNI/ref=sr_1_57?crid=5WB9SSB6IMP6&keywords=urine+bottle+hanger&qid=1661403742&sprefix=urine+bottle+hanger%2Caps%2C59&sr=8-57

10/ Regarding urine bottles. When I need to go out in my wheelchair, I find urine bottles difficult to use. So, I use Conveens. See my separate blog about these: ‘Not so public convenience.’ On my site https://howcaring.home.blog/ I’m sorry there doesn’t seem to be a female equivalent.

These are Conveens. they are prescribed by your GP.
https://products.coloplast.co.uk/coloplast/continence-care/conveen/conveen-optima/conveen-optima-sheath-standard-length/

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A Bit of Support

I have a confession to make. I have had a bit of support. No, it’s not a girdle, nor a truss. Obviously I don’t need those. I’m surprised your mind went to such things.

The support I am talking about, came from Advent Advocacy. Specifically, Joanne, I can actually give you her real name, whoopee. I feel like I should make one up, just for fun. I’ve gotten so use to having to make up names.

JoJo, sorry, Joanne has been incredible. Let me just start up my Thesaurus. Otherwise, I’m gonna get boring saying how brilliant and fantastic she is.

We needed help with a care related issue and Joanne was awesome. Glad I started up the Thesaurus. She visited us at home and after spending time getting to know us and our situation, understood what would help. She is empathetic, caring and knowledgeable. The most amazing thing is that she doesn’t even cover Hartlepool. The request for advocacy help was accidentally sent to her (not by us, I hasten to add). She saw that we had been waiting for support for weeks and stepped in to help. Going above and beyond her normal remit, is just one thing that makes her stand out.

Superwoman, oh I forgot I can use her real name. We first met Joanne at a time when we didn’t know which way was up. Having turned my wheelchair the right way up. Why do feel the need to explain that is a joke? Oh yes, because we live in an age where some people think the earth is flat.

Joanne has a way about her that cuts through the… rubbish and helped us see the issues. I will not go into the details, that isn’t the point of this blog. She transformed the situation. Her knowledge and skill were essential. But it comes with understanding, empathy and compassion. At the end of the day, you can train someone with knowledge. Only character brings the rest.

Mary and I want to wholeheartedly thank Joanne. It is a heartfelt thanks and we know that she must be a blessing to many.

A Special Thanks

‘A special thanks goes to…’

I feel like one of those award show hosts. But without the false tan, bleached teeth and the big hair. Well without much hair at all really. Let’s not talk about teeth. Back to the thanks:

‘A special thanks goes to….’

 ‘The award for the best… goes to…’

Hey, maybe I should be an awards host. I’m a natural. I can just see me up front, in a big Hollywood venue. Will they have a ramp for the wheelchair? Or would I need to present from in front of the audience, just by the orchestra pit? I know, will start off with:

‘Welcome to the 2022 awards for the best…’

Everyone will be looking around asking, ‘who’s that speaking?’

‘Where is that deep and luscious voice coming from?’

‘Is that James Earl Jones’

‘No, don’t be silly, it’s Morgan Freeman.’

Anyway, enough of the asides. I am writing this blog as a big thank you. A very big thank you. A special thanks to the two social workers from Hartlepool Borough Council, who have helped Mary and I these last few months. I would love to name them, but I am told I can’t and besides, they know who they are. Thank you El and Karla, oops, no, just made those names up.

The two of them have helped us sort out care provision at a really difficult time. They have demonstrated empathy, understanding, care and patience. I cannot praise them highly enough. Anyone who has read my blogs regularly will know that I believe people who care for people are the most valuable people in the world. Does that remind you of a Barbara Streisand song? ‘People who need people, are the…’ Totally different meaning of course. But give me the whiff of a song and I’m off.

Back to these two amazing and wonderful social workers. Along with all those who care for and help others. We had a brilliant advocate as well. Not Advocaat that’s a cream liqueur. They should be recognised as the best and paid the most. People who care for people, not cream liqueurs. Instead, we as a country and indeed, the world recognises them least. We value money, fame and entertainment over those who care for people. What an upside-down world we live in.

I know this, when an MP, banker, millionaire financier or the PM is ill. They won’t be calling on their brokers, personal assistants or advisors to care for them. However highly they pay them. They will turn to health workers, carers and those at the sharp end of care. I am pleased to say that when we have needed to do that, we have found help and support.

As I round off my awards ceremony, I repeat my special thanks to these two wonderful social workers from Hartlepool Borough Council. Well done you are brilliant people, and we really value you. Everyone who can stand, up on your feet for a rousing applause.

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My Article Published

Inside Housing have published my article/blog Enabled by your environment. It has triggered interest from a national newspaper. They wrote the headline.

https://www.insidehousing.co.uk/comment/comment/i-had-to-move-to-the-north-east-to-get-an-accessible-home-we-need-to-provide-more-housing-for-people-with-disabilities-76113

You can register free to read the full article.

Wheelchair Etiquette

Well, anyone who knows me, will realise that I am 100% serious. I never have my tongue in my cheek, nor write farcical blogs. Now we’ve established that. Let me outline an important issue that has come to my attention. I was reading on a wheelie site about how to greet a fellow wheelie when out and about.

Now this is an issue that has given me must angst. I never know what’s right. For anyone who is not a wheelchair user, picture the scene. You are out in your wheelchair. You may be in a powered wheelchair. Or being pushed. You may even be self-propelling. Hold on, the motive force is irrelevant. Then you see a wheelchair coming the other way. What do you do? In between feeling awkward and panicking that is.

If you were on your feet and walking along. You could do what most people in that situation do. Pretend your eye level is too high to notice the wheelchair. We are literally out of your sightline. Job done; embarrassing situation averted. No need to think of a suitable reaction. Well, I can’t do that. Even if I wanted to. I am looking straight at the oncoming stranger. They just happen to also be in a wheelchair. Is that some kind of kinship? An automatic bond. A fellowship of the wheel? All friends together. United in our common limitations? How do I react? What do I say?

So, a wheelchair is heading towards me. I needed to repeat that as it was so long ago I last mentioned it. Who is in it? Does it matter anyway? If it was a famous person, or Royalty. The Queen has a fancy golf cart now. So, it could be her, out for a spin in another new bit of equipment. Maybe it’s someone I know. Scrub that. I don’t know anyone local to me in a wheelchair. A stranger is wheeling towards me at speed. Actually, that’s unlikely. They are probably wheeling towards me slowly. I have lots of time to consider my actions. Oh, the angst.

Have you got the scene in your mind? Let me mess that up and add some extra detail. The most likely time I might meet a fellow wheelie is on a wide and straight promenade. As in alongside a beach. Now you are all in the South of France or Spain, sun beating down. Cool off a bit. This is the Northeast of England.

Back to reality. I am wheeling slowly towards a fellow wheelie along the promenade. This is sounding like a Hollywood movie. You’re picturing a romantic moment of meeting. The music swelling. But that is not the right image at all. I am approaching a complete stranger. Unless it is the Queen. I feel like I know her. She’s on my stamps and money. No, its not the queen. Let’s not be silly.

Do I smile, pull a face, ignore them, frown, scowl, say something? Hang on a second, who said that? I am British and an introvert to boot. Maybe there is a secret greeting for two wheelchair users. Are we like the Masons? Do we have a coded wheel bump, or twirl of the chairs that we are meant to do? Is there just a double right eyed wink? That could be tricky if you get it wrong. Just imagine you all take me literally and start doing that. I really need to know what to do.

Answers on a postcard to, ‘WheelsUp, Confused Row, Bea MY M8

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Above and Beyond

There are times when people do things that are above and beyond. They go out of their way to help you. Yesterday, Kelly from Persimmon Customer Care did just that.

If you read my blogs regularly, you’ll know I spend most of my time in a hospital type bed. What you may not know is its position. Right next to a double window. Late the night before last, the little plastic button that enables it to latch/open/close, broke. As our house is still under warranty, I emailed Kelly at Persimmon asking if she could arrange for it to be fixed. I explained that it was the one by my bed and that I am in that bed most of the time. The weather has been very variable. As wind/rain can blow straight in and onto my bed, it needs to be able to close. But it also needs to be able to open on these hot days.

I got an email from Kelly pretty early yesterday morning to say that she had contacted BPS (the window supplier/manufacturer/fitter) asking them to fix it. That’s the proper procedure in this case. I got a text from BPS about 20 mins later saying they would be out in 21 days to repair it!!

I phoned BPS and explained that it was the window by my bed, and I am disabled, and all the above about weather. Two hours later I got another text from BPS with an improved timescale, 14 days!!

I emailed Kelly back and told her all this and asked if anyone from Persimmon could help more quickly. She phoned me back within the hour. Kelly told me she’d organised for one of their customer care operatives, Ross, to come round that afternoon and fix it. When I thanked her, she said, that she couldn’t leave me by a window that doesn’t shut. Ross turned up about 3pm and replaced the handle. I realise that is above and beyond what they had to do. Persimmon could have left it to BPS. But Kelly recognised that it was a very real issue for me. She personally found a way to sort it very fast. I cannot commend her highly enough for that. Hence writing this blog, just to highlight what she did.

No Fingered Typing

I have a confession to make. Don’t get too excited. It’s not that. Or that. I never learnt to type. It’s not that either.

When I was doing my Open University course in English Lit and a Diploma in Creative Writing. I know, it is incredible that I am actually qualified to write. Who knew, not me. At risk of highly annoying any OU tutors who may be reading this; as if they would be reading it. They have given up on me years ago. I had better get back to the point. When I was taking my OU degree and diploma, don’t forget that. I was disabled and limited. Not as much as now, but significantly. Here’s an aside for anyone thinking of studying who is disabled. There are grants available to help you get any equipment you need to study. Which meant that when I started to study, they realised I was typing with two fingers and gave me a two fingered key board. I could just leave it at that and there will be loads of people trying to buy two fingered key boards. This is the problem with social media. If something is written here; it must be true. So let me be very clear; I was joking. There are no two fingered keyboards. Unless they sell them in the shop with the striped paint.

I hope that cleared up any confusion. In reality there will still be people who believe that there are two fingered key boards. Nothing I say will convince them otherwise.

I really must keep on topic. So the real thing that the OU disability grant gave me was voice recognition software. At the time that was Dragon Naturally Speaking. It enabled me to write and even use my PC using just my voice. Now you are all thinking, ‘so what, we can do that with Siri, Google and Word uncle Tom Cobbly and all.’ Yes, but this was a few years ago. Before every device chatted to you, morning, noon and night. Before you could say, ‘Siri, take a letter.’ And she would say, ‘what?’ Or you could click on a microphone button in Word and an icon sit pulsing, waiting for you to talk. This was even before you could have an argument with Alexa.

These days, I have Word. With that pulsating microphone button. The one problem I find… stage fright. It’s like you have walked out onto a giant stage. The audience is all staring at you. You walk up to the microphone ready to sing. Everything goes quiet. What do you say? Obviously I burst into song. Sorry, I mean that I start dictating amazing literature. The next War and Peace. Booker Prize here I come.

It is all very confusing. People assume because I blog, that I sit typing away for hours on end. In fact I chat to my PC for short periods at a time. Then it talks back, I tell it to be quiet, we eventually get an amazing blog together. Not this one obviously. All my secrets are now out in the open. I can’t type and I like talking to technology; who knew?

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In A Galaxy Far, Far, Away…

Star Wars must be the most disabled conscious movie franchise ever. Unrealistic and silly, of course. But, it has so many disabled people in it. Some play really major roles and are completely unlimited by their disability. Just think of Darth Vader.

Never mind blades or artificial limbs. Take a look at the reconstructive surgery on Star Wars. This was ‘A long time ago,’ not just, a long time ago, but, ‘in a galaxy far, far, away.’ Obviously one that believed in equal access for all. Now it’s true, they had slaves and they went around blowing planets up. No ones perfect. They also didn’t have the best environmental record. Any civilization that has a complete planet as a city, has issues. Then take a look at the amount of metal and technology in their garbage disposal. What about all the stuff they jettison every time they go to light speed? Don’t get me started on their waste of energy. Heating massive empty spaces with ceilings that disappear out of view. Come on evil empire, join the energy saving nations of the universe.

As for health and safety. I don’t think they had thought of it. All those balconies on space stations without railings. The bridges that retract. Then when they do extend, they have no railings. As for the idea of having a power station in your living quarters with an open access to fall into. That’s just asking for trouble. The Evil Emperor did very well not falling into it long before Darth Vader threw him in. That was an accident waiting to happen. Pod racing? Well, it makes all the sports we have look suitable for kids.

But I am blogging about disability. Which is just as well. So I don’t need to look at any of that. Darth Vader is a disability hero. OK, so he may have murdered millions of people. He had his faults. But, he was severely disabled. Only half legs, half arms. Major lung problems. He doesn’t just sound breathless, he was. Yet as he strode around the battle stations. Strangling disobedient Admirals, he looked fit as a flea. It’s just as well he didn’t need to pass any PIP assessment. He would have failed.

Imagine the scene. He would have sent the form back. Truthfully saying that he had no legs below the knees. No arms beyond the elbows. Serious lung problems (COPD maybe?). But with PIP they are not interested in what you have, but what you can do. So they would ask. 1/ How far can you walk. DV would answer. ‘Don’t waste my time with your puny questions. I have a Death Star to inspect. The examiner would check the size of a Death Star and put the answer down as 6 miles+. 2/ Can you lift a bag of potatoes? DV I will rip that generator from the wall and throw it at you. The examiner will look at the generator and estimate the weight at 3 tonne and put, yes. The rest of the questions would go in a similar way. When Darth gets the PIP refusal letter, he would lift the examiner by his neck and say, ‘your lack of respect disappoints me.’

It’s not just Darth who is amazingly able in spite of disability. Luke Skywalker has a false hand. Yet you would never know it. Luke’s Uncle ends up in a flying wheelchair. I want one of those. Why aren’t they around, a long time later, far, far, nearer.

There are even characters whose only human organs seem to be a human heart. That gives a new meaning to a heart transplant. Maybe they do body transplants? Disabled people may not get a blue parking space on Star Wars. But they get flying wheelchairs, robotic parts and complete new robot bodies. I am not queueing up to go to that universe. I don’t fancy everything that goes with it. But if I could pick and choose. Then either a new working body. Or failing that a flying wheelchair.

Oh well, A long time ago, in a galaxy far, far away… they had some crazy ideas about disability.

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The Unexpected Emergency – New version

I didn’t plan on giving Mary a big shock that morning, in fact really it was 111 that should bear the brunt of the blame.

The day started fairly normally, for me. It was 2006, it was the last time we were living in Hartlepool and this was before I had the downturn in 2007 that led to me needing a wheelchair full time. I had a routine blood test at the GP surgery. Except it wasn’t as routine as I hoped. Anyone who has had a blood test will know that the comment, “you’ll feel a slight scratch.” is absurdly optimistic. Most times, not only do you feel a very sharp scratch, but it also aches while they take several tubes of blood. That day I felt absolutely nothing, not the tiniest bit of pain. Not the needle going in, not the ache while it was in, not even the nurses hand on my arm. It’s been said before, I am very fast to react to such things and take action. So obviously I totally ignored it, didn’t mention it to the nurse and went home. I did think about it at the time. My thoughts went like this, “that was odd.” At home I thought again, “that was very odd.” So you can see, I was very on the ball.

Actually “that was odd.” Is a favourite expression of mine. I said it several times when our neighbours house was being burgled. I heard the break in, and I said to Mary, “you don’t see that every night”, as I watched the thieves walking down the road with a TV. My brain churns slowly sometimes.

My brain was working just as fast after I couldn’t feel my arm. At home, I rolled my sleeve up at home and touched my arm, it felt like it had been anaesthetised. Finding a pin I tried sticking it in various parts of my arm but it was numb.

Before you think I am a complete idiot I did wonder about a stroke. So I lifted both arms, which I could do, same strength. I could feel both legs. I looked in the mirror and smiled. My straight and goofy face smiled back. Obviously something was wrong, but it wasn’t likely to be a stroke. Mary was in the kitchen cooking lunch and over the years I had caused her enough panic with my illness. So I decided I would check it out with 111 rather than bother Mary about it. I think 111 was a different number at the time.

Our phone was in the hallway opposite the front door and by the stairs. I sat on the stairs. Mary was through the other side of the front room in the kitchen unable to hear anything as there were two closed doors between us. I explained to the 111 operator that I had a numb arm but I was sure it was not a stroke. She told me to hang on a second, then continued to ask questions. Before she had finished asking her questions there was a knock at the door. I opened it to find two paramedics standing there. We lived just half a mile from the hospital, hence the speedy arrival. I hadn’t even known the operator was requesting paramedics, so I was just a little surprised.

Explaining their arrival the lady on the phone said she had requested them immediately and let me go. I was taken into the front room and wired up to a heart monitor and had an oximeter put on my finger. Mary was still cooking in the kitchen with the door closed oblivious to all this. I was fully checked over, heart, oxygen, blood test. As always with any ambulance visit they offered to take me to the hospital for a full check up, but they could see what I had already said, it was not a stroke. I later found out it was one of the early signs of neurological damage I now know that I have.

It was while the two paramedics were standing over me with all their equipment connected that Mary walked through to say lunch was ready. She took finding two paramedics in high vis jackets, standing over her husband who was wired up to a heart monitor, extremely well. If she was shocked and horrified she hid it very well. Her jaw only momentarily hit the floor and her eyes were only a little wide. I’m also not sure it was a gasp she gave, it could have been a sound from the kitchen. The pressure cooker could have been on.

As I began it certainly wasn’t my plan to shock Mary and as you can now fully see it was really all the fault of the 111 operator anyway.

 

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One size doesn’t fit all

I am totally behind more accessible housing and support any move that will increase accessible housing stock in this country. But one size does not fit all. I was a finalist in the Habinteg Essay Writing Competition 2020 and my essay explained that what is needed, as we look into the next 50 years of accessible housing, is variety. I argued for communities that cater for varying needs.

A point has been made that 1 new accessible home is planned for every 15 people over 65 by 2030 and that this is not enough. I would say this, surely the point is not about people over 65 but disabled people. Not everyone over 65 has mobility issues. Shouldn’t the real question be ‘how many people are there now in need of accessible houses and how many will there be by 2030?’ Then a further question is ‘what type of accessible housing is needed?’

One size doesn’t fit all. When I wrote this blog, we were staying at what was once an RNIB training centre and is now a hotel. So, the corridors are laid out to help blind and partially sighted people. This means there are white, raised strips at regular intervals along the corridor and on corners, the bottoms of stairs and by doorways. Obviously, these are really needed and helpful for blind and visually impaired people. The same is true for raised bumps on pathways by crossings generally that you will all have seen. But these kinds of bumps are very uncomfortable in a wheelchair. I would not suggest that they are removed as they are needed for other disabilities. But what benefits or is needed for one disability can be a limitation to another. I am sure that there are disability aids which are a problem to able bodied people too. I am merely pointing out that ‘one size doesn’t fit all.’

My point is this: we cannot say that we need more ‘accessible’ housing, nor that there are more disabled people needing accessible housing. What we can and must say is that there are a variety of needs in our society, among those needs is a pressing need for ‘accessible’ types of housing. Many types to meet many needs. Wheelchair accessible, accessible for blind and partially sighted, accessible for limited mobility, deaf, and various other needs. One size does not fit all. A ramp and a wet room are only really needed for mobility issues. Visual doorbells for hearing problems. Having raised floor markers would be a great boon in a house for visually impaired but a big problem to the comfort of a wheelchair user. That’s before you even look at the heights of units needed if you are in a wheelchair to those not in one. One size does not fit all. The problem is that often these issues are championed and put forward by people without a lived experience of disability. The designers often lack that lived experience, even if they have a second-hand knowledge from a family member or loved one.

The point I argued in my essay was that communities were the way forward. Communities of varying types of housing. When a new housing development is planned it should include all types of housing. Housing to suit families, single, couples, older generation, disabilities of various types including wheelchair users, people of all social backgrounds. If you mix people together rather than ghettoizing by need or age, then you create a supportive environment where people naturally form social networks. We have lost that sense of community and yet the recent pandemic demonstrates that we miss it and naturally want to re-create it.

In 2021 we moved to a new build house on an estate in Hartlepool. Our house was already accessible. It was M4 (wheelchair visitable). After a DFG grant and various other adaptations, it is now fully accessible for my power wheelchair. The community we live in is amazing. It has its own Facebook page. We have found people here to be the most friendly and helpful neighbours you can imagine. In Storm Arwen people turned up to help us. When we had Covid, neighbours have offered and done our shopping. People on the estate have helped us in more ways than I can count. It is a community, not just a group of houses. I feel as if we have moved to a living embodiment of the kind of place I wrote about in my essay. A group of people of all ages and backgrounds who care about and support each other. Ever day I read on the Facebook page about examples of that care and support in action between people on the estate.

Such communities as the one we now live in, don’t replace professional care services. They add to them. Because much of the care provided by professional agencies today is what was once done by friends and neighbours. I am not referring to washing and dressing people. That is a care agency or personal care role. But a world where you need to pay someone to visit you, or go shopping with or for you, seems very messed up. We have a massive care bill; I wonder how much of that bill is for services that most of us would have once seen as being neighbourly and friendly?

Community is at the very heart of care. I started by saying that one size does not fit all. Accessible housing and care needs vary by need. Many things we need are normal human interaction. Other things are more specialist. Each person’s needs are different. Because we are all different.

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Never Mind The Quality Feel The Length

A repeat of a post I did a while back:

Is quality a thing of the past? That seems a stupid question, after all everywhere you look things are advertised as luxury, professional or pro for short. Advertising tells us that things are built better, stronger, more durable… yeah right, we all believe that don’t we? In fact we have become the quality control department for most products. Instead of manufacturers checking them, they are sent as is and fail in our home. We then send them back or bin them. Built in obsolescence. Never mind the lack of quality feel the short product life.


I have an NHS power wheelchair it’s a Quickie Salsa M2 and I am really grateful to have such an amazing tilt and tip wheelchair supplied. It’s transforms my life. But I cannot ignore that it seems to be very poorly made. I have had it for three years and well within the first year the frame started to move alarmingly, what I mean by that is it’s become loose and rickety. Add to that the paint peeled so badly that rust was the main colour visible on the frame.

I wonder if the NHS commissioners request poorly built? Obviously not, and when you consider that this chair is available privately and cost about £7000  for the setup I have, I do wonder at the excuse Quickie would have for what appears to be poor quality manufacture. I know the NHS get them for more nearer £4000 so do you think Quickie USA have two production lines? One that only applies one coat of poor quality paint and uses low quality parts that go to the NHS and a better line for private? I am of course joking, well half joking, they will make only one version. I can’t see how the NHS who are paying companies like Quickie a lot of money, can get such seemingly poor products from them. What is happening with the people who select these companies? Do they check on quality? Don’t tell me they are NHS products and I should just be grateful for any old tat. I told you these same chairs are available privately. They are merely bought by the NHS.


Don’t give me the argument about it being better if a private company is involved either, because I got my wheelchair through a private Company used by the NHS, Milbrook. So if private companies are really the way forward to drive up quality through competition and quality control I would be saying how wonderfully built my chair was. No, in reality all that privatisation does is add a profit layer into the mix. So that someone has to make profit out of the transaction. Ergo the end product has to be of a lesser quality because the amount of money being spent is the same, the product needed is the same, but someone in the middle is making a profit. Corners are therefore cut.


In case your wondering. I have part of the answer. The NHS and/or the private companies they use send out part reconditioned chairs. You might think that makes good economic sense. Have you heard the term ‘Life Cycle Cost?’ LLC. It is where a company assesses the total cost of a product over its life, not just its up front, capital cost. You include servicing and spares. Servicing includes the engineers and service admin. Spares are much more expensive than original parts. Even if you clean up and recycle a part that costs money. So LLC is high where a poor quality product is chosen. If you buy a good quality product, its capital cost can be higher, but its LLC lower. The NHS is short sighted. It only looks at capital spending. Why? Because LLC is spread out and seems better. In reality its not. More money is spent over a longer time.


Cars used to rust almost as soon as they left the showroom. Now cars are sold which boast of 7 and 10 year rust free warranties. Car parts used to fail within months, now they last much longer. The car manufacturers want people to keep buying new cars, but they do that by making new cars attractive and second hand cars hold value for re sale. Wheelchair manufacturer’s seem to have a very short term vision, sell their chairs to the NHS or desperate people who need them. Longevity of the chairs do not seem a factor, that is how it appears to me. Prove me wrong manufactures, show me how well you build your chairs.


That will not change until wheelchair users make a hue and cry and the NHS start to complain that they are not happy with the high failure rates. CCG’s (clinical commissioning groups) do you even track the failure rates of wheelchairs?


My fellow wheelies (wheelchair users for those who don’t know) take note of this. If you are an employee of the NHS and have any say in this process take note of this. If you are reading this in another country and have similar issues, take note. It takes a massive backlash to companies before they sit up and take notice.


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Life Is But A Dream

There are mornings that I wake up from a lovely dream. One in which I am walking, running, pain free. As I wake and turn on a light (by voice), the pain hits me first, normally through my eyes. Did you know, it’s not just love that hurts, light hurts too? My head joins the party next and I have not been at a party drinking the night before. So no excuse and nothing to blame. If my body is in an uncooperative mood (it normally is) it stays still for quite a while. When it does deign to move, it makes it’s presence felt. I guess it doesn’t want me to miss out on congratulating it for the effort of moving.

Once I have turned over. That is a big task in itself. Reached for the bed control and sat the bed up a bit. I skipped removing the CPAP. That’s the bit of equipment that keeps me breathing at night. Anyone with sleep apnoea will know about that. I then look around. No point looking at my tablet computer yet. My eyes can’t focus first thing. Just as well I have a good imagination, I just think.

It’s at times like this; every morning. That I have often contemplated the words of that song. ‘Row, row, row your boat.’ Actually, it’s not that bit I contemplate, that would be silly. I think about the words, ‘life is but a dream.’

As a Christian, I know life isn’t a dream. The Matrix is a great movie, but it’s just fiction. Life is reality, dreams are dreams. But as I transition from the sleeping/dream world into a rather painful and limited reality, I do muse. I muse about how nice it would be if this real world were the dream. If the dream world, of walking, running and being pain free were real.

I did not write this as a ‘feel sorry for me’ piece. Nor is it meant to be maudlin. But, if I never write the truth about being disabled and ill. You will think it is all laughs. I smile and laugh because I make that choice. Every morning as I lie in pain, I make that choice. Often I say to myself, ‘come on Michael, pull yourself together.’ I call myself by my full name when I want to chivvy myself along.

I don’t look down on those who can’t do that. Others suffer far more than I. We can never know what another person is going through. Don’t judge someone because they are angry with being ill, disabled or limited. I can’t know the pain of another; neither can you. I can’t understand what you are going through; it could be far worse than me.

If there is one take away message I would want to give, it’s this. I know that we all have struggles in life. Whether we are ill/disabled or not. Life can be hard for us all. Especially at the moment with all the financial burdens and stress.

Be kind to one another. Be gentle and caring. We all need the grace and strength to get through each day. Let’s help each other through it.

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False advertising

I was in a passenger in a car recently, after a long time stuck in bed. I noticed things I had missed before. Road signs that should definitely be highlighted to the advertising standards board.

One sign promises a magnificent Stag at bay. What a treat. Binoculars at the ready. Camera out and focussed. Where will this magnificent beast appear? Will it leap across the road? Should I look out for it on the grass verge, as it nibbles it’s mid morning snack. Will I catch it mid leap, as it sails over the hedgerow?

I can hear that you’ve already gone through this disappointment. You’re pretending that you always knew the truth. There was never a time when you took that sign literally. Your genius knows no bounds. I, on the other hand, am a mere mortal. My knowledge limited. I might even call myself a fool; before you do. Yes, I know now that the sign means wild animal. Now I realise that it means, watch out for anything from a field mouse to a hedgehog, crossing the road. Not exactly a look alike for a stag now are they? All very disappointing.

As if that isn’t bad enough. There is that wonderful sign for antique bellows, plate cameras.

You see them everywhere nowadays. Mary burst my bubble, she said they were telling us those dull grey or yellow boxes were coming up. Yes, speed cameras. In what way does that box with a flash built in, resemble a lovely old Victorian camera? What’s happening to the world?

Still, as we drove along, at least we had a shop selling fairy lights to look forward to.

But no, apparently that was just telling us the traffic lights was ahead.

Getting over that bitter blow, I saw a very exciting couple of advertising boards. The circus must be coming to town. Or a danger act. There are going to be flaming cars and motorcycles leaping across cars.

But apparently those are all just road signs too. Although why we need telling not to carry explosives in our car, I’m not sure. As for the flying motorcycle…

You don’t need to panic about me driving. I was told I couldn’t drive a long time ago; just as well eh?!

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Disability Top Trumps

Did you ever play that game as a child, ‘Top Trumps?’ It came in loads of forms, cars, boats etc. You would deal out cards that listed the specs of whichever list of things you were comparing and play. Let’s say you were playing with cars.

I would have a car with a 2 litre engine, 5 doors and a top speed of 95mph. So I would then decide to choose the engine size and say, 2 litre engine. My fellow players (I was a child, so it would be my brothers) then have to look at their hand of cards and see if they have a car with an engine bigger than that. It always seemed as if one of my brothers could trump me. They would have a V12 engine that had 3.6 litre engine.

You get the idea? Bigger is better. The person going first choses a particular thing, then other people can see if they can trump it.

I never knew until the other day that some people play that with disability. We were chatting to the wife of a disabled man who we had not met. She was checking an access door. We told her that it worked great for getting in to where she wanted to go.

Out of the blue. Instead of just saying thanks, or I knew that. She said, ‘my husband can’t walk or stand. He only has one leg.’ She looked rather accusingly at my two legs. I did wonder if I should hide one. Or just explain that I couldn’t walk or stand either. That was why I was in a wheelchair. But it seemed best to just carry on talking.

Somehow the topic got around to wheelchairs. She told us that her and her husband had every type of wheelchair going. A power chair, a motor scooter. I began to wish that I had brought my V12, 3.6 litre wheelchair out that day, the one with chrome exhausts. She was definitely trumping me. Not that I had realised the game even existed or that I was playing it.

Before our encounter with this lady, I always assumed that everyone had a different limitation, illness or disability. We all make the best of it. She seemed to be bringing a new ‘trump’ element into being disabled or ill. I should say here, that here husband was not with her. So he was not part of her ‘odd approach.’

A bit later we did see him with her; or rather behind her. He was trying to catch her up, pushing his self propelled wheelchair for all he was worth. She never mentioned they had one of those.

There is a moral to this blog. I think the lady in question was probably struggling with being a carer for a man in such need. When we saw him, he did look in need. He was not finding it easy to wheel himself. You might say, ‘why wasn’t she pushing him?’ Perhaps she was coming to the end of her tether. Her, rather unfortunate, way of coping. Was to leave him to struggle and create a make believe world of how great everything was. It struck me that she desperately needs help.

I do know this, a lot of carers, desperately need help. They have a massive weight on their shoulders. We are living in a time when there is a crisis in the support available. A shortage in funding and a shortage in people, linked to the first. The result will be seen in the near future as carers become those needing care. This is not a problem that can be ignored.

I wrote this blog in a deliberately satirical and humorous way to catch your attention. But the message is serious. Carers are struggling, they need help. Only political change can make that happen.

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All Encompassing Fact

You are probably expecting an amazing fact. Not an unreasonable assumption. After all, I have brought you blogs on why we don’t live forever. How to keep things brief. The nature of the universe, among other incredible facts. But no, that is not the purpose of this blog. What is it’s purpose? I wish I knew, I started it so long ago, I’ve forgotten.

I’ve remembered. The brain is getting slower with age, but it is still sharp… ish.  When people ask to swap with me in a wheelchair. Which they do quite often, when they see me sailing up a steep slope. Did I tell you that my power wheelchair can go on water? Well, not literally sailing of course. But powering up a hill effortlessly. For me that is. My wife Mary, who is my full time carer. Has to walk alongside up the steep slope; or behind.

She is actually operating the controls. My chair is dual control (rear and side). I had to sign a bit of paper to the NHS saying, on pain of death. Well maybe not on pain of death, but it was a serious bit of paper. That I would not operate the power chair outside. Because I lose muscle function with very little warning. Those spoil sports didn’t like the idea of me powering into the road, or a crowd of people. I suppose they have a valid point.

As an aside, if Mary is behind my high backed power chair, people don’t see her. They assume I am controlling the chair. As you know, I do not have a sense of humour. So I never take advantage of that misunderstanding. You will never see me closing my eyes or looking all over the place, while my big heavy chair, heads towards a crowd.

If Mary is operating my chair from the control on my left (the one designed for my use in the house), that causes confusion too. She can only do it on wider pavements. People approaching us often assume she is just walking beside me. They are unaware that she is operating the chair. They walk straight at her, expecting her to move out of the way. Not just at her, but looking to pass between her and my chair. She has to let go of the controls and bring us to a sudden halt. This has happened when crossing a road; not my favourite experience.

Where was I. Yes, people saying they want to swap with me in my wheelchair, especially on a hill. I am not alone in this. Most wheelchair users get asked this. You might think, ‘so what?’ or ‘what’s the issue?’ you might even be thinking, ‘I’ve done that.’

Let me put it into a form that might hit home. If you wear glasses and someone said, ‘wish I had those?’ when they couldn’t see a distant object. Or you wear a hearing aid and someone said, ‘wish I could borrow that,’ for a short time they can’t hear a distant voice. Or how about you have dentures and someone at a restaurant, struggling to chew their meat says, ‘wish I could have your dentures.’

Those are silly suggestions, because its a silly question. Wheelchairs are not to get us up a steep hill. They are an all encompassing fact. My answer to anyone who says, ‘I wish I could swap with you,’ is this: ‘sure, you can have it all. The lifetime of limitations and the care needs.’ You don’t pick and choose a wheelchair to help you up a steep slope. It is a frustrating need. Just like you don’t choose poor eyesight or poor hearing. You don’t choose to lose your teeth. If you need a wheelchair, you would rather not. Having someone suggest a swap is fine, if they really wanted to swap everything. But of course they don’t.

An all encompassing fact, means just that. Limitation, illness, disability, differently abled, however you want to describe it. They are not a choice. Someone puffing up a hill and seeing, what to them looks like an easier option, is saying, ‘I choose an easier option.’ Disability, illness, limitation is not it. Perhaps they need to exercise more. Or if that isn’t an option, and they do need mobility help, they shouldn’t look enviously at those in more need, they need to get help themselves.

Limited mobility is not a choice, it is an all encompassing fact, that we end up with by disease, illness or an accident.

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