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Medical prose

I don’t want to sound rude, resentful and ungrateful but I am getting completely fed up with the loss of dignity, privacy, autonomy and spontaneity that goes along with being a disabled person, reliant on homecare and personal assistants for my every need. It’s horrible and I hate it so much. I would give so much to be able to have a lie-in because I feel like it, not think about what I’m going to have for my lunch until I’m actually hungry, do something without having to plan it days in advance and have a wash and get dressed without an audience, but I can’t. Just for once, I’d like to be able to be left alone and to chose to do things, because I want to do them, without anyone else being involved, but it’s not going to happen.

After a year of frustration, with agency staff looking after me, I now have a team of lovely carers, whom I employ myself, who come in three times a day, and they do everything for me. Which, don’t get me wrong, is nice, but, just for once, I’d like them, if to were possible, to just go away and leave me alone. They come into the house first thing in the morning, often when I am still asleep, and wake me up, even if I don’t want to be awake. They bustle around, opening and shutting doors, making idle small-talk and turning on the lights. They go to the bathroom, get a big bowl full of water and then strip the bedclothes and my pyjamas off me, wash me and give me a bed-bath. Whilst they do this, and whilst I am still half asleep, trying desperately to get back into the lovely dream I was having only minutes before they came, they ask me what I want for my breakfast and for my lunch and then one of them goes to fetch it. I’m hardly fit for anything before I’ve had my morning coffee but I have to go through the morning routine every day before I even get a glass of water. Forty-five minutes of frenzied activity every morning and then, just a quickly as it started,  I’m on my own until it all happens in reverse in the evening when they come to get me ready for bed. And this is my life. No frivolous conversation about what was on the TV last night, no questions about what I did the day before, no talk about what I’m going to be doing next month or next year, or my plans for the future, just the same thing, day in, day out. No variation. Well, I am completely fed up with being poked, prodded, turned, talked to, flustered and disturbed all the time. I would like to be able to wake up when I want to wake up because I feel like it, have a wash in a bathroom with the door closed, without an audience, change my mind about what I’m going to wear when I’m halfway through getting dressed because I don’t want to wear whatever I got out of the wardrobe after all. I want to be able to go to the kitchen and choose what I want to eat for my breakfast by looking in the cupboards to see what’s there rather than having to choose from the supermarket delivery note. I want to get to look out of the window and THEN decide if I’m going out or staying in rather than make all my plans for the day in advance. I want to be able to do what most people do and live a ‘normal’ life. I want to make simple, little decisions about my life, on my own, without comment, but I can’t. Don’t get me wrong, I really do appreciate the dedication of all the people who help me on a day-to-day basis but, just for once, I want it to be like the old days.

Having the autonomy to do my own thing was never something I truly appreciated when I had it but, now that I don’t, I really want it back. Being able to do something spontaneously was never something I really thought about but now I can’t be spontaneous I really miss it. In the past I have just gone to the station and caught a train to the other side of the country because I felt like it, now I can’t even change my mind about my sandwich filling without having to ask someone else to deal with it for me. Privacy when it came to being seen naked or in my underwear was never something that really bothered me. Changing rooms in clothing stores and leisure centres didn’t bother me and if someone wanted to look at me or stare then so be it. Once you have given birth, with an audience of doctors, nurses and midwives, you get to realise your body is not really your own. Even so, that was years ago and I thought it was something I could put behind me but no, it’s back and it’s not likely to go away now.

I so wish I could just be me again and have my old life back but, unless someone makes a medical breakthrough and finds a cure for me, I’m going to face the fact it’s not going to happen. I am just going to have to grit my teeth and get used to being the new me. It’s not the life I envisaged for myself when I was younger or the life I would have chosen but it is the life I’ve now got. Spontaneity, privacy and dignity as I knew them are now for other people, not for me. My life is now different and there are many other people who are involved in it so, I suppose, I had better knuckle down and get on with it.

Roll-on the future, let’s see what happens next.

Anyone who has ever received any treatment whatsoever, in hospital, must surely be grateful for and appreciative of the work of all the wonderful junior doctors we have working in the NHS. A service that is free at the point of use and whose  medical staff are professional and dedicated.

For most of us, our first meeting with doctors and nurses would have been before we were even born when our mothers would have received ante-natal treatment and our final meeting will be close to, and probably even at, the very moment of our deaths. In between these two events the vast majority of us are likely to see the inside of a hospital more than once. And every time it will, almost certainly, be a junior doctor who treats us. The work these people do for us is immeasurable and we should all be so thankful for the men and women who dedicate their working lives to looking after the health of the entire nation. No task is too small, no task is too difficult, they will do their best to help every single one of us from the moment we go to a hospital for treatment until, hopefully, we are ready to leave, significantly better if not cured. And these are the people who are about to have a new contract forced upon them. A contract which will be detrimental to the entire profession. A contract that is making so many consider resigning and moving to work abroad where doctors are properly appreciated and valued.

As a disabled person I have had call to use the services of my local hospital on many occasions, maybe more than average, and on each of those occasions I have received the most wonderful care and compassion from all the doctors I have seen. As a parent I have had even more reason to see the work of our junior doctors first hand and, never once, in more than fifty years, have I ever heard any of them complain or say they can’t or refuse to help. As far as I am concerned they are all wonderful people who do their best from the second I first meet them until the second I say goodbye. When I had my first child they were admited to the special care baby unit at birth and treated there for a week before I was able to take them home. They were treated by junior doctors. When my younger daughter had some major asthma attcksas as a small child it was the junior doctors in my local hospital who treated her so she could come home later, fit and well. When my ex-partner had a motorcycle accident and was taken to Accident and Emergency he was treated and his life saved by junior doctors both there and on the ward. When my elderly father was in a nasty accident and broke his neck it was junior doctors who worked tirelessly to save his life and his mobility. Last year I spent several weeks as an in-patient and every day I saw the dedication displayed by these men and women as they worked tirelessly to help and treat every one of us on the ward. I saw the way they would stop and smile and talk to every patient, even the ones they weren’t about to treat themselves. I heard the abuse that some of them were subjected to by some very ill people and people in tremendous pain who, almost certainly, would not have behaved the way they did or said the things they said if they hadn’t been so ill. Not once did these professionals bat an eyelid or say anything back, they just went on doing their best for us all. They were polite and dedicated at all times, however tired they may have been, however many hours they may have just worked, however many more hours they still had to work before they got their next break. They were amazing.  

This is why I will continue to support the industrial action our junior doctors are being forced to take, I know they wouldn’t be doing so if they didn’t feel they had no other option. Junior doctors are the lifeblood of our National Health Service and their work should be valued and applauded by all of us who have ever had to use hospital service and that, I suspect, is most of us.  

To all the Junior doctors working in the United Kingdom, from one of your many patients, thank you, I would not be alive without you.

So – Lord Carter has said in a report published today that hospitals need to find a solution to ‘bed blocking’. Now, that’s an easy one. I know what needs to happen. Four words – sort out social care! If the Government was prepared to spend some money on doing this rather than cutting services left, right and centre, otherwise healthy people could be discharged safely from hospital as soon as they are better, freeing up their beds!

Sorted.

How do I know this? Because I was bed-blocker myself. Last winter I became ill. Very ill. I had to be taken into hospital for, what proved to be, a lengthy stay due to having developed a seriously infected pressure sore. Now, I am more than prepared to acknowledge that, initially, hospital was the best place for me. I need IV antibiotics and thrice daily dressing changes and specialist treatment and stuff like that, but I was, to all intents and purposes, ready for discharge three or four weeks before it actually happened. Sure the wound from the sore was still there but the infection had been dealt with. The PIC line, the way the medics were getting the IV antibiotics into me was removed and I was given tablets to take instead. I was ready to go. Well, I say I was ready to go but that didn’t actually happen. Not then, anyway. I continued to lie in my hospital bed in the ward, for several weeks, after I had been told I could go home.

I became a bed-blocker.
The thing that stopped me and delayed my discharge was trying to organise a home-care package for me. I needed two things, medical attention to continue with changing the dressings and ensuring the infection didn’t come back and a care package so I could have people coming into my home every day to help wash, feed and do some cleaning for me. Medical care was easy. District nurses and my GP could deal with that. It was the home-care package that was the sticking point. It was only after I had made many several tearful phone calls to a contact I have on my local council that Social Services got their act together and a package was agreed so I could leave. Social Workers did their best but found it nigh on impossible to sort out an agency to provide the carers I needed. Three visits, with two carers each time, every day. A grand total of 31.5 hours each week.

As far as I can make out the major issue was the amount of money carers are paid. Considering the things they are expected to do their rate of pay is derisory, under ten pounds per hour. That’s all. They get no money to cover the time they spend travelling between jobs, under ten pounds per hour for the time they spend with an actual client. Most of the ladies that come to me have several clients they are paid to see but they get nothing for the travel time between us all. This can amount to two or three hours travelling time every day but they get nothing for it. And, there should be sufficient money in the budget to allow carers to spend the necessary time they need with clients as well. Fifteen minute visits need to end now. How can anyone be expected to care for someone properly in just fifteen minutes? Short-cuts will happen and people with suffer.  

The Government really does need to take a long, hard look at social care in this country. Social Services should have sufficient funds to be able to pay carers a reasonable sum for what they do. Carers should be recompensed for the time they have to spend travelling if they are visiting several people every day. Salary levels should be increased so that more people can be attracted into, what can often be, a very difficult role. If we are entrusting the care of our older and disabled citizens to an under-funded service. What can we expect apart from people left languishing in over-stretched hospital wards for far longer than is needed. Bed blocking is a problem that is only likely to increase as our population ages. Until there is enough funding for proper social care, we can expect more and more otherwise healthy people to be left in our hospitals far longer than is needed. There may currently be a cash-crisis but, unless our Government starts looking for a longer term solution and increases funding for social care improvements, things are only likely to get worse. People who have no need of a hospital bed will be left on our wards for weeks whilst people who are in urgent need of treatment will have nowhere to go.

Listen to the professionals who know what they are talking about. Stop the penny-pinching and start investing. Bed blocking shouldn’t be allowed to happen any longer. Act now before it’s too late and a fixable problem becomes an insurmountable crisis. Fund social care properly and stop expecting home care professionals to work for nothing.

Touchy subject today but so vital for so many.

Organ donation.

According to reports I have been reading online, one in seven families are currently going against a deceased loved one’s express wishes and vetoing the donation of their organs for transplant. We’re not talking about doctors hovering round a patient on their deathbed then just taking what they need without a by-your-leave, no we’re talking about people who have said they want to donate their organs when they die whose relatives then say no.

Why? What’s the problem?

The person who has died must have thought about it if they bothered to register and fill in a card. It’s what they wanted, so why? Why not save someone else’s life if it’s possible? Why condemn another family to losing their loved one too? What’s the point of burning or burying something that could give so many a possible future by refusing to do what a family member wanted? In my view, that’s just selfish.

When I die I will no longer need my body. I will no longer need any of my organs. I will have become no more than a piece of meat. I will have no further use for them. The essential me will not be there any more. I will either have vanished into the ether or met my maker and gone to heaven, hell, Valhalla, wherever. The key point is that I will be gone. If my choice is that my organs should be passed on to someone who needs them rather than being wasted, isn’t that good? Shouldn’t my wishes be abided by?

Several years ago I did what nearly everyone else does and wrote my will. I made a decision about what I wanted to happen to all my property, my personal possessions, what little I have when I die. I made a list of my things and said what I want done with them all. And, when I die, my family will inherit those things. They are unlikely to refuse them, few that there may be. Why then, if they extremely unlikely to refuse to abide by my wishes concerning the distribution of my goods and chattels, should they have the right to go against my wishes when it comes to my body? In many ways, isn’t that the most valuable thing I have? Which is more important, a few bits and pieces of jewellry and a pile of bricks and mortar or the gift of life to someone else who will die without my organs? Isn’t that precious gift the best legacy I could leave?   

I understand how traumatic the death of a relative can be, which is why I am a great advocate of having an opt out scheme for organ donation rather than our current, opt in system. Wales now has opt out, why not the rest of the UK? Opt out would take so much pressure off families and off the medical profession. How hard must it be for a doctor to say to a parent or a child ‘I’m so sorry, there is nothing more we can do. Please can we operate now to remove kidneys, lungs, liver, heart so we can give the to someone else?’ It’s not a conversation I would like to start. Given how crucial speed is when it comes to organ removal for transplantation, surely a presumption that donation is the norm rather than the exception is the way to go?

When I shuffle off this mortal coil I would like to think that my family would get more comfort from knowing that a little part of me, a little part that I no longer need, has helped save someone else’s life and lives on in them rather than knowing I have been buried or burned in my entirety and everything wasted. Unless there is a religious belief that forbids it or a valid medical reason such as serious illness, infection or addiction which would prevent donation being a possibility, I feel that most people would prefer to save a life rather than refuse to help. Opt out removes the uncertainty, it should be implemented immediately and legislation passed to ensure there are no more unnecessary, preventable deaths. Doctors should be allowed to take what they need. Very few people would like to have an organ preserved in formaldehyde on their mantlepiece but the knowledge that another family still has a son or daughter, father or mother, brother or sister may, in time, help a lot and keep a memory alive. That is a legacy I can live with.    

I am absolutely fuming. Steam coming out of my ears, effing and blinding fuming.

Why? I hear you ask.

OK, bear with me. Here’s the situation for you.

My Housing Association, the one I have rented a home from since 1987, has been doing big renovations works to all the houses they own in my estate. They have been ripping out and replacing all the kitchens and bathrooms with nice new shiny ones. I live in one of the properties which was due to have this much needed work done. Over the past few weeks we have had designers and tenant liaison officers and surveyors traipsing around the house doing everything that needed to be done before the work could commence. My daughters and their friends have spent many hours packing and clearing all our goods and chattels from the rooms where the work was going to happen and storing them in nooks and crannies upstairs. My ex-partner has, very helpfully, come from the other side of London and taken mountains of rubbish to the tip for us. My carers have done their best, without complaint, to work around the amount of kitchen equipment that has had to be put been put in the room where I sleep and spend my days.

After much planning and faffing the contractors started my new kitchen last week and a lot of fuss, noise and dust it has been so far but, it’s being done.

Now, every other tenant who has had this work done has had both rooms dealt with at the same time but, due to my disabilities, they decided they would deal with my kitchen first and then do my bathroom as soon as the kitchen was finished. I was then told that, because we have Christmas happening, my bathroom would be done after Christmas.

So far so good…

I have now been told, unofficially, that the renovations contract is coming to an end early and, whilst the kitchen work is OK, because the bathroom hasn’t been started yet, it’s not going to happen at all. I am so angry.

There is a very good reason why the bathroom hasn’t been started yet. The fact that I am a disabled person with care needs so it was decided that dealing with two rooms at once would be too disruptive. In other words, if I hadn’t been disabled and it had been possible to do both rooms at the same time, the way the Housing Association has done for other tenants, then the bathroom would have happened. They are saying that due to the reasonable adjustment that they made for me by doing the two rooms one after the other because of my disability, I now won’t get the bathroom done at all. In my opinion, this can’t be right. In my opinion this is this disability discrimination and I am absolutely furious.

There is a lot of repair work that will still need to be done in there anyway which would have been dealt with in the bathroom refit that is now not going to happen. The skirting and pipework boxing was ripped out by workmen ten years ago so they could repair damaged pipework. The workmen never came back to sort it out. This would have been repaired in the new bathroom. We had a  new combination bidet and toilet installed two years ago when the old one broke. It has never been commissioned so the bidet part has never worked. It would have been commissioned for the new bathroom. Our current bathroom, which was put in especially for me, is not a wet room which means I have been unable to have a shower since I came home from hospital in February and have had to make do with bed baths instead. My new bathroom would have been a wet room. The tiles are all coming off the walls due to some major cracks that need dealing with and new tiles need to be put up. The new bathroom would have meant the cracks were filled and new tiles were put up. I am now told that, due to my disability, none of this will happen. All this work will still need to be done but, when is anyone’s guess.

I am not going to let this rest. I refuse to go down without a fight. My half-done kitchen looks as if it will be beautiful, I want my promised and much anticipated bathroom too. I want the pipework boxing in. I want proper skirting boards. I want no cracks in the walls. I want tiles that don’t keep falling off. I want a toilet and bidet that works. I want a proper wetroom. If my Housing Association try to fob me off I will be looking for a legal representation and I will be taking this further. Why should I, just because of my impairment, get left out. I’m sorry but it’s just not happening, you’re messing with the wrong girl.

I am not a happy bunny. In fact, I am a distinctly unhappy bunny. 

I am currently feeling angry and frustrated and vulnerable and uncomfortable all at the same time and I don’t like it.

Let me explain.

I live in social housing, a Housing Association converted Edwardian terrace property. My Housing Association is currently doing planned maintenance on our estate where all the proerties are getting new kitchens and bathrooms fitted.

Lovely yes?

Well yes up to a point.

I am a severely disabled woman who s restricted to lying in a hospital bed in my front room most of the time. I am totally paralysed due to Multiple Sclerosis from armpit level downwards. Above that level things work pretty well, below that, nothing. Nader. Sweet FA.

This means that all the work that needs doing in my house has to be done round me. Again, technically not much of a problem. But my two wonderful, adult children aren’t at home much during the day  one works full time and the other is a student so is at college several days every week. And I am on my own. I have carers who come in three times every day to feed me and attend to my personal care needs but they are only around between 9 and 9.45am, from 11.30am until 12 noon and then again from 5.45pm until 6.30pm but that’s it.

Normally this is completely alright – me, my TV, the DVD machine, my computer, Wifi and a little mini fridge with snacks in on our lonesome but, at the moment, it’s all wrong. I currently have a selection of workmen and women, kitchen fitters, plumbers and electricians traipsing in and out of my property all day, with hardly a by-your-leave and wandering up and downstairs at will. The only reason I know someone is there is if I happen to hear the front door opening, if they knock on the living room door to tell me they are in the house or if I hear footsteps in the bedroom above me. The whole thing is making me extremely uneasy and paranoid.

The worst part so far was yesterday, day one of what I am told will be a three or four week job, when, after the workmen had told me they were leaving having finished for the day, one of my carers appeared to ask if I knew that my front door had been left open. The workmen had gone and had not shut or locked it behind them. Not only that, when the plumbers had been to put in a temporary sink after everything else in the kitchen had been stripped out, they had failed to turn the water back on properly so I had no hot water at all. Nightmare. Today I have had no workmen at all but the plumber has returned, after I rang the Housing Association, and, hopefully, hot water will be restored later on this afternoon. I hope so, this morning’s tepid (using water from the kettle mixed with an excess of cold water so I didn’t get scalded) bed-bath was not funny.

I get a weekend off from the chaos but next week, I am reliably informed, will commence with a day when the electricity is turned off all day. I have pointed out that I need some power for my hospital bed and the anti-pressure mattress that I have to prevent a recurrence of pressure sores so they are going to let me have one double power socket and a collection of extension leads to power everything I need.

I get the impression that the Housing Association, the contractor and the workforce have never dealt with a property where a severely disabled person who is restricted to their bed lives before. They really don’t seem to know what to do. My older daughter and I are now writing an information sheet on how to work with disabled people which we will be sending them when the work is finished. We have both done a certain amount of disability equality and LGBT equality training before so this is not unfamiliar territory for either of us. Thinking about it, I will also put the factsheet onto my blogsite too in case other people or organisations would also find something like this to be a useful resource. I would hope so anyway.

Fingers crossed that things on the workmen and paranoia front improve dramatically next week or my blogs are likely to become more and more desperate. In the meantime, the crazy, unhappy bunny with a haunted look and straws in their hair in South East London is me. Maybe, like Edmund Blackadder, I need to stick two pencils up my nose and shriek ‘Wibble’ at the top of my voice until I feel better.

Yesterday evening, when doing my usual surf through the innumerable posts on Twitter, I spotted one which posed a question that made me think.

‘Where are the pictures of your family? Should you have photos of your disabled children in the office?’

What a question!

Why could that even be an issue? Of course you should. It’s very simple, all children should be celebrated, disabled and non disabled alike. Without exception.

Most people like to display pictures of their children, their partners, their loved ones on their desks or as use those pictures as ‘wall paper’ on their workplace computer so that everyone can see them. It’s normal. Even if you are a very private sort of person, it’s usual to have one or two pictures of your family on your desk, on your computer, in your handbag or in your wallet. And, if you work in an environment where everyone else is proudly displaying pictures of their families,  what are you saying if your colleagues know you have a family of your own and they never get to see photographic evidence when it is something that is part of your workplace’s culture. How many parents don’t have one of those awkward school photos somewhere. How many parents don’t show off the holiday pictures of their children splashing in the waves to their friends? How many grandparents don’t have pictures of gummy, grinning babies lying, kicking and laughing on fluffy blankets or shaggy rugs they can boast about? Don’t all children need to know they are loved and that their families are proud of them?

If we have a disabled child or grandchild in the family, what are we saying to them if we don’t have any of those pictures around. Why are we trying to hide them away. What is the message we are giving them?

Are we implying that there is some sort of ‘problem’?

Are we saying that we feel ashamed?

Are we telling people that there’s something we don’t want our friends and colleagues to know about?

Why?

Children bring so much joy and happiness into every parent or grandparent’s life, whoever that child is. There should be no difference in now we all feel about disabled and non-disabled children alike. Every child is worth celebrating and adoring. In this technological age where we all have digital cameras, smart phones, laptops and tablets there is nothing to stop us capturing every significant moment and showing it off to the world. Whether child is disabled or not there will always be something to show. So why not do it. Why not let the world see how you feel about everything those amazing children do by having pictures of them on your desks, your walls, your shelves, your computers. Have pictures everywhere.

Don’t try to denigrate disability by hiding your disabled children away. Hold your head, and your pictures, up high and celebrate the joy and pride you feel in their lives, however long or short, easy or difficult those lives might be. Show your love and pride for all your children and grandchildren to the world so that everyone knows how you feel and, especially, make sure that those children know how you feel and how much you love them.

Don’t denigrate, celebrate.