Routines

I expect that most of us who have myositis, or any other chronic condition, tend to live our lives by a set routine.  This is especially so as you become more affected by the condition, and this then places limitations on what you can do, and the amount of assistance you require.

 

If like me you have carers come to you - I have carers come three times a day - this pretty much sets your routine for the day.  You know that the carers will arrive at a certain time in the day, and therefore you ensure that you are ready for when they arrive.

 

Also if you have a condition which results in you suffering from fatigue, you tend to manage what you do, to ensure that you don't run out of energy - or spoons (if you don't know the "Spoons Theory", I can tell you about this some other time) - too early in the day.  You spread tasks out over the course of the day, or over a couple of days, so that they don't completely wear you out. 

 

If you know you're doing something unusual on a certain day, you tend to prepare for this by not doing as much before hand, to try to save up some energy - or spoons.  But you know that a day outside of a normal routine, will really take it out of you, and you'll spend days recovering.

 

Most days are pretty much like any other.  It makes me laugh when people ask if I'm doing anything special for Christmas.  Actually my Christmas will be pretty much like any other day - partly because I'm not a very Christmassy person - bah humbug - but mainly because if we do too much then I'll just be asleep by mid-afternoon, having worn myself out (much like the rest of the population).

 

However much you try to stick to a routine, there are always going to be the occasional days when you need to do something outside of this normal routine.  Visits to the hospital, visits by or to friends.  Although these are everyday events for most people, these changes to our routines can have a huge impact on us.

 

Occasionally there will be a week when everything comes all together.  When every day seems to be busy, and your normal routine goes out the window.

 

Well this week is one of those weeks.

 

On Monday morning I had a 10.00 am meeting with the Area Co-ordinator from the Care Agency, to conduct my annual review.  This is where we get to look at any problems I might have with my carers, and my care package, and see if there is any more services I require.

 

As any of you who are regular readers of my blog will know, over the last month or so there have been a few problems, which have resulted in me writing a letter of complaint to the Agency, and including Social Services and the Care Quality Commission.  So it was going to be an interesting meeting.

 

Now things started off badly with the lady turning up late.  This is one of my pet hates.  You agree a time for an appointment - so you should be able to turn up on time.  If you're running late, you can easily use a mobile phone to say, you're going to be late.  But there does seem to be an assumption that if you're disabled, then you've got nothing better to do than wait in, so it doesn't matter if they turn up late.

 

At least you should have the courtesy to apologise for being late - but she didn't even acknowledge the fact.

 

We then went through my care package, which is fine and doesn't need any changes.  I'm quite happy with the carers who come to me, the majority of the time, so there are no issues that need to be dealt with.

 

However, when we talked about the overall service I receive and how satisfied I am with this, she didn't seem to think that the poor service from the office - which is what my complaint was based on - needed to be documented on the forms.

 

She then had to do a "risk assessment" to see if there was any greater chance of me being a danger to myself or others, because of changes to my condition, or environment.  This hasn't changed from last year.

 

Finally, as she thought we had finished I asked here about my complaint and what was happening with it.  She said that it was being dealt with and I should hear shortly.  I pointed out that the companies own complaints procedure states that any written complaint will be acknowledged in writing 2 days after receipt, and that within 14 days a full written account of the investigation into the complaint, along with the actions and measures taken, would be sent to me.  Neither of these had been done, and accordingly the company was in breach of its own complaints procedure.  She assured me that this was an oversight and that I would get a letter by the end of this week.  (I'm not going to be holding my breath),

 

So this took about an hour.

 

In the afternoon I then had an appointment at the Diabetic Clinic at my local medical centre.  This is only 15 minutes away down the road, and I go there in my powered wheelchair.  However, Monday was a wet and miserable day, and this meant that I needed to put on extra layers to keep out the cold and rain.  I have a waterproof cover, which goes over both me and the wheelchair, and keeps both dry.  But its impossible for me to get on and off on my own, so Mum has to come down with me.

 

I am early for my appointment, but as usual the clinic is running late, so I have to wait for about 20 minutes before I'm called in.

 

About 2 weeks before my clinic appointment, I had a fasting blood test, and gave a urine sample, so they have all the results ready for the clinic.  Everything looks very good, with my long term blood sugars and fats being where they should be, and my cholesterol levels are within the right area.

 

So there is nothing much to discuss, as the tablets I am taking seem to be keeping my diabetes stable, and we make another appointment for 6 months time.

 

After a wet trip home, I'm able to get into my armchair for a bit of a rest.

 

Tuesday is my day to go to the local community centre - the Douglas Brunton Centre - where I volunteer teaching members how to use computers.  Its good fun, as the people are usually quite interesting to talk to, and its something a bit different one morning a week.

 

I get picked up about 9.00 am and get home just before 2.00 pm.

 

Usually I'd get in my armchair in the afternoon, and recover from the morning, but today Mum isn't feeling great, so I give her a break.

 

Wednesday morning I have an appointment with the Eye Clinic ay Croydon University Hospital.  I have ordered a taxi to take me - I can travel in my wheelchair in London black cabs, as they have rammed access, and as a disabled person I am entitled to a reduced fare, through a scheme called TaxiCard.

 

The taxi picks me up just after 9.30 am and we arrive at the hospital in plenty of time.  I make my way to the clinic and book in and then expect a long wait to me seen.

 

The Eye Clinic is always packed with patients and everyone always has to wait for a very long time.  I cannot ever remember being seen on time.  But it does seem to be badly organised, and a bit chaotic.

 

When I book in, the clerk has to look through all the files to find mine.  They don't appear to be in any sort of order, either alphabetical or numerical. 

 

I have been attending the Eye Clinic for about 4 years.  I have a Macular Scar on my right eye, and they are monitoring this to ensure that it doesn't get any worse.

 

An hour after my appointment time, I am called in by one of the nurses, who gives me a short eye test.  He then has to go and find a more senior nurse to come and put some eye drops in, which will dilate my pupils, before I have a scan of my eyes.

 

The other nurse comes and warns me that the drops will sting - which they don't - and puts them in.

 

I then have to wait to be called for the scan.

 

After about 15 minutes, I am called in and given the scan.  Its only a matter of sitting in a dark room with my head on a frame looking into a camera and a blue light, whilst they look at my eye.  It takes about 10 minutes to do both eyes.

 

I then have to wait to see a doctor.

 

This takes about 15 minutes before I'm called in.  The doctor reads my notes, and looks at the comments from the scan.  Then he has a little look into my eyes.  The Macular Scar is unchanged.

 

However, he says I have the early signs of a cataract in my right eye - thank you Myositis and Prednisolone - but it isn't something to be concerned about at the moment. 

 

He advises that he'll see me in a years time.

 

I leave the clinic and make my way down to the front of the hospital.  I ring for a cab to collect me and take me home.  I'm expecting a long wait, so don't rush to get outside.  I just get out of the door and the cab pulls up.

 

I get home about 12.30 pm, which is much earlier than I expected.  My vision is blurry, I have a headache and I'm knackered, so I get in my armchair and fall asleep for the afternoon.

 

This morning my carer overslept which meant she was 45 minutes late getting here.  I really appreciated that extra 45 minutes in bed.

 

Today I have nothing on, so its very much a day to recover and rest.

 

Tomorrow I have an electrician coming at about 8.30 am to put up some new light fittings, so that will be another disruption to my normal routine, with having to organise the work, talk through what needs to be done and where, and make any decisions.

 

Weeks like this aren't the norm, and usually I'd try to spread out these sort of appointments so they don't all come together, but this week has been unavoidable.  At least at the end of this week I'll know that all these things are out of the way, and I can spend a quiet weekend recovering.

Joost Van der Westhuizen

Some time ago I did a blog about Joost Van der Westhuizen and wrote about my admiration for his great rugby ability, and now his fight against Motor Neuron Disease.

Below is a link to an interview he has given recently, whilst on a trip to Wales to watch South Africa beat the Welsh at the Millenium Stadium. on Saturday.

http://www.bbc.co.uk/sport/0/rugby-union/24890861

For a man who was such a great athlete, and embodied the South African rugby spirit, to see him reduced to this is very sad.

It makes me feel very lucky.

Some more about standing and the long awaited video - Yipee!

It's been a while since I've written about my standing using the new Levo C3 stand up powered wheelchair, and at the end of last week I finally managed to get a video of me using it, so I thought I'd update you on how things are going.

 

Remarkably it's now 7 weeks today, since I took delivery of the wheelchair, and I really feel that I'm starting to make good progress and feeling the benefit of using it almost every day.

 

Levo C3 Stand Up Wheelchair - sitting

 

Levo C3 Stand Up Wheelchair - standing

 



Unless I am going out, when I use my Viper S powered wheelchair, I get my carer to assist me getting into the Levo wheelchair, after I have got up, showered, and dressed in the morning.  I then have breakfast, after which Mum helps me by putting on my trainers - which give me good support in my ankles and heels as I stand - and the puts in place the knee/leg supports and then puts the chest strap round me.

Viper S Powered Wheelchair

 



I then go and stand looking out the front window, watching the world go by.  I am usually standing somewhere between 10 and 15 minutes, but on a very good day I have stood for as long as 20 minutes.  It isn't actually hard work, standing in the chair.  I had expected that it would be hard on the muscles in the legs and that these would hurt, but actually this isn't the case.  When I first started standing the legs did feel weak and after 10 minutes standing, would feel a bit shaky, but this has now gone.

 

What actually limits the amount of time I can stand is the discomfort in the soles of my feet.  I wasn't expecting that, but suspect that not having stood for 5 years, the soles of my feet need toughening up to get them used to having weight put through them.

 

After having stood, I then tend to transfer back to my Viper S wheelchair, as this is more comfortable to sit in - or I'm more used to this chair and it feels more comfortable - and it is easier to manoeuvre round the house.

 

You might be wondering if its worth having if I'm only using for this short time every day. 

 

As I can build up more tolerance to standing, I will be able to stand for longer, and eventually if I can get to a point where I can do a couple of stands of reasonable length, each morning, that will have even more benefit.

 

Below is a video of me standing using the Levo C3 stand up powered wheelchair.  Sorry that the lighting isn't the best, and the cupboard behind me doesn't allow you the best view of the chair actually raising up and down, but hopefully you'll get a good idea of how it works.

 

I have also muted the background noise - as the washing machine had just reached it's spin cycle and all you could hear was this whizzing round - and have therefore put on a song by Saint Etienne - Who Do You Think You Are - which I hope you'll enjoy.

 

 



You will note that when I am standing I am not getting up completely straight.  Part of this is to ease the pressure on my feet, and therefore extend the length of time I am standing.  Also I need to stretch the tendons in my legs to get them used to standing straighter - which is something they won't be used to from all the sitting down in the wheelchair.  I try to get a little straighter each time I stand.

 

The final reason is one of confidence.  As I get more upright, I feel as if I am on the edge of tipping forward.  Although I have the chest strap which will prevent this from happening, and that the chair itself is extremely stable, I still need to build up my confidence in this regard.  I'm sure you'll appreciate that tipping over feeling, and wanting to avoid doing something that might end in setting back my progress.

 

So what benefits have I found from standing?

 

Even in the relatively short time I've had the stand up wheelchair, I've started to notice little benefits.

 

I've written previously about being able to see the world from a different perspective, literally, and the difference that this can make.  Just simply the joy of being able to stand, is a real tangible benefit after having spent 5 years sat down.

 

Physically, I can see a difference in my legs.  They aren't swelling up as much as they used to and the skin on my legs appears to be in slightly better condition.  I've even got hairs growing back on my lower legs - which might not sound like much - but that's quite a big thing.

 

I am also feeling a bit of an improvement in my core strength - which is one of the areas that is really hard to achieve any improvement.  We are only talking about a very small improvement to my stability when I am sitting on the side of the bed first thing in the morning, but its definitely an improvement.

 

One of the issues many wheelchair users find is that their bowel movements become very irregular and constipation is often a big problem.  Although I would say that this has never been a great problem for me, there has definitely been an improvement in this direction.

 

Also it has helped to lessen the occurrence of sores on my bottom.

 

But the most noticeable benefit has been with my toes and feet.  I have Raynaud's and have always suffered with cold hands and feet.  Since being in the wheelchair, my feet have almost constantly been cold, and the changes in skin colour had become quite pronounced.  Earlier this year a friends wife was shocked to see that I had purple toes - and even more shocked when I laughed it off as being normal for me.

 

Well over the last few weeks I've really noticed that these changes in skin colour have almost completely disappeared.  I won't say my feet aren't cold but they certainly aren't as cold as they were before I started standing.

 

So that's where I am currently with standing and using my new chair.  It was quite a lot of money, but it was worth it, and I can see that the more I can use it the better the benefits will feel.

 

I'd just like to finish this blog by saying a thank you.  It was in December of last year that I saw Liz Dewar, one of the senior Physiotherapists at the National Hospital for Neurology and Neurosurgery, in Queens Square, London, during an appointment at one of the IBM research clinics.  She saw the potential benefits to me and offered me the opportunity to attend appointments with her team to explore the options to getting me standing.  After almost 4 years of being told I couldn't stand it was a breath of fresh air.

 

Liz and her team, where brilliant.  Patient, encouraging and supportive, they deserve a great deal of credit for giving me the opportunity, and for working so hard to help me achieve my goal of standing.

 

Thank you to them all!

  

Disability, In Praise of Carers and a Stormy Night

It is now just over a year since the London Paralympics finished and it is interesting to see a piece in this mornings news about how this event has changed peoples perception of disabilities and the disabled.

 

The Paralympics were a great show case to present to the world what disabled people can achieve.  It wasn't about the negative - what I can't do - but rather about the positive - what I can do.  We watched great sporting endeavours from athletes who daily have to overcome huge hurdles just to live a normal life.

 

But was it a fair representation of disability and disabled people.

 

Of course it showed off the undoubted talents for people who have worked very hard to overcome their disabilities to compete in sport at the very highest level.  But not all disabled people are able to achieve, and participate in sport.  There isn't the facilities at most sports clubs to accommodate disabled people, let alone the equipment to enable them to participate.

 

Only 17% of disabled people are born with their disability, and if like me you come to be disabled later on in life, then the adjustment to be able to live independently takes a great deal of time and effort.  Being able to participate in sport is a non-starter.

 

The public's perception of disabled sport and disabled athletes is at an all time high.  People like Jonny Peacock, Hannah Cockcroft, Dave Weir and Ellie Simmons are now spoken of in the same terms as abled body athletes and their achievements are recognised as being on the same level as their abled bodied counterparts.

 

And all of that is great and very positive.

 

However, very little has changed for the ordinary disabled person.  I've had this conversation with able bodied friends, and they seem surprised when I say the Paralympics made very little difference to how I, or other disabled people are seen.

 

If you try to use public transport as a disabled person, you find that seats which should be there for the use of disabled people are occupied, and people simply won't move. 

 

Try catching a  bus in a wheelchair and invariably you'll find the space for parking your chair is occupied by pushchairs, or by people simply standing in the space. 

 

And similarly on a train, the space for a wheelchair, is used by passengers for storing cases and pushchairs.

 

How often do you try to park in a disabled parking space only to find this is occupied by someone without a "blue badge".

 

Or try to use a disabled toilet, and find that an able bodied person is using it, because they couldn't be bothered to find and use the able bodied facilities.

 

And that's all without commenting on the difficulties of accessing public transport and buildings, because they aren't wheelchair friendly.

 

On social media there are often comments directed at disabled people, that make uncomfortable reading.  Examples like:

• "If she was my kid, I'd have her walking by now,"
• "I'd do anything to be sick like you and thin."
• "Is your child normal?"
• "Disabled people don't have to pay bills, do they."
• "People like you should be in a home, its not fair that the rest of us have to deal with your problems."

I've been shouted at and abused in the street, often when I've asked an able bodied person to move their car, when its parked over a drop kerb, where I need to cross the road.

 

For all the good that the Paralympics could have done, sadly it was followed by a campaign by the current government aimed at reducing the welfare bill.  One of the main targets for this was benefits which are specifically for disabled people, and the governments intention to reduce the welfare bill.  In trying to justify their policy they have labelled disabled people as work shy, scroungers, who are happy to sit at home, and take hand outs from hardworking tax payers.

 

This distorted view of the disabled has ignored the fact that disabled benefits have less than 0.5%fraud, and that many disable people have worked and paid their taxes, etc, prior to their disability impacting on their ability to work.

 

But it has helped to foster a public perception of disabled people that is very negative.

 

A great quote that I think sums up attitudes to disability comes from the sculptor, Tony Heaton, who created the giant wheelchair sculpture that adorned the Channel 4 building in London during the Paralympics.  He says:

 

"It's amazing that in 1969 we as a society managed to put a man on the moon and yet we still can't get a wheelchair user from one railway station to another nearly 50 years later… You have to come to the conclusion that it is a lack of will to create a more accessible world, not lack of technology or design skills."

 

Last night, here in the UK, we had one of the worst storms that has hit the south of the country since the hurricane of 1987.  There has been loss of life, extensive property damage, homes left without electricity and major disruption to the public transport and roads network.

 

In my area it all started to kick off as it was getting dark, round about 5.00pm last night.  You could hear the wind and rain battering the house.  Early in the evening I had a call from my carer to say she would come to me late to put me to bed.  She arrived at about 11.20pm - which is fine by me.  She was soaking wet, from running from her car to the homes of the people she was visiting, and looked worn out.  But she could still laugh about the weather.

 

She put me to bed and as normal, I dropped off almost as soon as my head hit the pillow.  I slept right through the night, without disturbance from the wind and rain.

 

I expected my carer this morning to be late.  She has to come quite a long way, and I was anticipating that there would be debris from the storm on the roads, that would make her journey difficult.

 

However, at 6.00am, right on time, she let herself in.  Although she said the journey had taken longer than normal, she had left early to try to be with me on time.

 

What a fantastic effort by two lovely girls, and it just shows how great most of the carers actually are.  A big thank you to Margaret and Hildreth.

More on Carers and a day out.

Following my last blog I have had lots of messages saying how bad the experience was with the agency and the Carer last weekend, and many have said that they have experienced similar problems.

 

I would say that for me 95% of the time, my Carers are excellent.   They are friendly, hard working and are dedicated to doing a good job.  As with anything in life it only takes a few rotten apples to tarnish the reputation of a whole profession.

 

I am pleased to say that Social Services were in touch with me on Tuesday afternoon and will take the matter further.  Also I have been contacted by the Care Quality Commission and we are due to have a telephone conversation on Monday, in order that they can get a few more details before pursuing this further.  So I'm pleased to be able to say that my complaint is being taken seriously, and hopefully this will result in an improvement in the service provided by the agency.

 

One of my real concerns when I come across this sort of service from the agency and the sort of attitude shown by the Carer, is how it effects other people.  I am - at least in my mind - pretty competent and capable of coping with this sort of service and attitude, although obviously it did really annoy me last week.  However I am always concerned how this impacts on those people less able to cope than I am.  Those people who are older, more confused and have less support than I do.

 

Well on Monday evening my Carer came to me and started to tell me about a lady round the corner from me.  Now several Carers have mentioned her as she is a bit of a character.  She is 97 years old, and despite having dementia, lives on her own.  She is often confused but is always happy and has a good laugh with her Carers.  However on Monday she seemed very subdued and withdrawn.

 

Having sat and spent sometime talking to her it seems that on Sunday, the same Carer who had been to me had visited this old lady.  Quite what the Carer did is unclear as the old lady is a bit confused about it all, but she has been upset to the point where she has said she never wants that girl to go there again.  She doesn't feel she can complain, as she doesn't want her care to be affected.  She was clearly very upset, over 24 hours after the girl had left.

 

To have caused that level of distress to anyone you are going to offer care to, let alone someone as old and vulnerable as this lady, is despicable.  I have heard that the agency have stopped using the girl any more, which I sincerely hope they have, but I wonder what will happen if they find themselves in need of a Carer at short notice.  And sadly there is nothing to prevent this girl going to another agency and getting work, as Carers are in such short supply, that girls are often taken on without proper references being sought.

 

On Wednesday I had my regular 6 weekly trip to the Royal Free Hospital, in Hampstead, for my infusion of Methylprednisolone.

 

My Carer came at 5.50 am to get me up, showered, dried and dressed, and after breakfast and my pills I was ready for the transport when it arrived promptly at 7.00 am.

 

The driver was the regular guy who picks me up, Dave, so I knew I was in safe hands, and after he had strapped me in, we were on our way.  The weather forecast for Wednesday was for a really wet, horrible day, but as we were leaving it was fine, and the sun was just making an appearance.  As we got down in the valley, to the main road, looking east, there was the most amazing red/orange sky.  It really looked like the sky was on fire, or some sort of alien sky.

 

Anyway, about 30 minutes later it started to rain, and that was the end of the spectacular sky.

 

We headed north, round Croydon, past Thornton Heath, through Norbury, Streatham and Brixton.  We skirted round Vauxhall and crossed the Thames at Waterloo Bridge.  The weather was so bad that at this point you could barely see along the river.  Using the Strand Underpass we then went past Euston Station, on into Camden and past the market, and up to Hampstead and the hospital.

 

We were there just before 8.30 am, so had made excellent time.

 

I went to the ward and checked in.  The ward I go to is called PITU, which stands for Planned Investigation and Treatment Unit.  It is a ward that is specifically there for people who need only to be at the hospital for the day, either for treatment, like me, or for simple procedures or tests which do not normally require an overnight stay.  Over the past 12 months they have been doing lots of work, modernising the facilities and creating much more room, so that more patients can be treated in this way.  Sadly, although they now have these great new rooms and facilities, they don't have enough staff to be able to use this new space fully, so much of it now sits empty and unused.

 

I am helped off with my coat, and one of the nurses checks my blood pressure, heart rate, temperature and oxygen saturation of my blood.  These are all good, and just as we are finishing these, another nurse appears with a cup of nice strong tea, just the way I like it.  It's one of the advantages of coming to the same hospital, and seeing the same nurses for so many years, that they know me so well that they get me a cup of tea, made just how I like it, without having to ask.

 

The nurse then puts the cannula in my arm, which isn't easy with my veins.  We then just need to wait for the doctor to come down to prescribe the drugs.  Usually the doctors take their time coming down to do this, so usually the nurses try to get all the drugs prescribed the evening before to avoid any delays.  It really must be my lucky day, as a doctor turns up almost straight away, and after a quick chat, fills out the prescription.

 

Whilst I'm waiting for the drugs to be made up, a few more patients turn up.  As we are sitting there we hear a very posh sounding lady, in the corridor outside of the room ask one of the nurses, where the psychiatric ward is.  The nurse replied that it was in another building but asked why she needed the psychiatric ward. 

 

Now before I tell you the ladies reply, let me say that none of us in the room could see the lady, but based on the posh sounding voice that had originally asked the question, we had no warning of the reply that was given.

 

Still in a very posh voice she said, "I need some knickers.  I wasn't given any this morning."

 

Fortunately I didn't have a mouthful of tea, otherwise it could have been very messy.

 

The lady then went on to say that she needed to see a doctor, but only a white doctor.  She was most empathic on this point.

 

The conversation spiralled from there around the woman's need to find the psychiatric ward, some knickers and a white doctor.  But it was a good example of how we had all heard the initial enquiry, and based on the sound of the ladies voice, had jumped to a conclusion about her, which was instantly smashed by her need for some knickers.

 

I'm not sure how this ended, as my drugs turned up and I was then distracted by the nurse connecting me up.

 

I have known Lorna for at least 10 years and she has looked after me very well in all the time I have known her.  I think of her more as a friend than a nurse.  We get on very well, and she often shows me pictures of her young daughter, who she takes great pride in.  Well today it was my turn to show her some pictures on my mobile, of me standing in my new wheelchair.  She was very excited about this and grabbed the phone and went off to show the pictures to the other nurses, and to some of the other patients.

The infusion only takes an hour to run through, and after a saline flush of the IV line, I am disconnected, have the cannula out and my coat back on by 11.00 am. 

I need to see my respiratory physio, Christine, so I give her a call and she agrees to come up and see me on the ward.  Whilst I'm waiting I go and arrange the date for my next treatment.

Christine arrives about 11.45 am, and has brought one of her colleagues, Steve, with her.  We want to do a blood gases test, and also try to do a lung function test, so we head off to the new department.

The old lung function area was based on the ground floor, near the entrance of the hospital.  The department was based in a small room, where they had three testing stations, plus clerical areas, and it was a real obstacle course getting in and out in my wheelchair.  The new department is up near PITU ward, and has all been newly refurbished and equipped, and there is masses of space.  However, again they don't have the staff to use all the nice new facilities.

We grab a room and Steve smears my earlobe with Deep Heat cream, to warm up the lobe and to bring the blood vessels to the surface.  Whilst he is doing this, Christine goes off to see if there is anyone free to do the lung function tests.

The blood gases test is to see the make up of the gases in the blood, and the volume of each gas.  They use the earlobe as the blood here has come from the lungs, and it is the easiest place to get blood that has been freshly oxygenated.  After heating the ear to draw the blood vessels to the surface, they then nick the ear with a scalpel and collect the blood in a small tube, or straw.  This is then put into a machine and it analyses the blood, and the combination of gases and their volume.

As we wait for the earlobe to warm up, Christine, comes back to say that there is no one available to do the lung function test, but she will definitely arrange this and book it for the date of my next treatment. 

Christine has previously asked me about wheelchairs, and I show her the photos of me standing in my new chair.  She has asked me to email her the details so that she has them if any one ever asks her about stand up wheelchairs.

Steve, makes the nick on my earlobe and collects the blood.  He quickly gets a plaster on the lobe, as it does tend to bleed a lot after they have done this.  I can't take the plaster off for at least 24 hours or it is likely to bleed again.

After analysing the blood they are pleased to say that all the gases and the levels are as they should be, except for the oxygen.  This should be 11.00% but my result is 10.92%.  Christine isn't concerned by this as all the other results are normal.

I then make my way to the transport lounge and check in.  Its about 12.30 pm by this point, and one of the nurses gives me a cup of tea and a packet of "Bourbon" biscuits while I wait.

About 2.00 pm, Dave, comes in and says he will be taking me home.  Outside its really wet and miserable, so I get into the ambulance and we are on our way quickly.

Going home, there are lots of hold ups in central London, so we head off in a slightly different way, to coming.  We head off down past Lord's Cricket Ground, and then down to Baker Street.  I've been along Baker Street many times, but never really taken much notice of it.  Today the traffic is slow, so I get a good look at the Sherlock Holmes museum - which doubles as the café below the flat in the BBC series Sherlock - and see the number of tourists coming out of 221b Baker Street.  There is a section of pavement cordoned off, where a man dressed in a period police uniform stands ready to have his picture taken.  Really sad is the man stood next to him, dressed in a long tweed cloak/coat with a deer-stalker hat, trying to be Sherlock Holmes. I'm sure you can have your picture taken with him, for a reasonable fee, but I have to say he looks nothing like the Sherlock Holmes described in any of the books, seen in any of the films or TV adaptions.

From here we go down through Shepherds Bush and onto Hammersmith.  We cross Hammersmith Bridge, which is a old narrow bridge.  This has traffic restrictions on it because of how narrow it is and its age but the best thing about this bridge is that in the past when the soldiers from the nearby barracks used to march across the bridge, they had to break stride, otherwise the uniform beat of the left, right, left, right rhythm of their feet would cause the bridge to sway.

From here we head down through Putney, Roehampton and down the side of Richmond Park.  We then cut over and round Sutton, and then round Purley, and get home about 3.30 pm just as the cloud breaks and the sun comes out.

And that was the highlight of my week.

Carers

I have blogged before about Carers but thought after the weekend that I've had, that it was worth doing another blog on the subject.

 

When I am talking about Carers in this blog I am not talking about family members or friends, who help out, or provide assistance, either as a one off or on a regular basis.  I am talking about paid Carers, whether paid for by local authorities or by the individual, who come into your home to provide a specific service or element of care, to a disabled person.

 

When I first came out of hospital; just over 5 years ago, a care package was put in place to help fulfil my day-to-day needs.  I had never had Carers before and after all the negative media reports about Carers, I was very nervous about who would come to me and the sort of care and the quality of care I would receive.  Naively I thought I would only need care for a short period, until I adjusted to being able to cope at home on my own.

 

Well here we are 5 years later and I still have Carers come into me 3 times a day, and to be honest, I don't know how I would cope without them. 

 

I think I have been very lucky.  Most of the Carers have been very nice and friendly and, most importantly, very good at their jobs.  They assist me with the things I need help with, but allow me to get on with the things I can and want to do myself, even if this means that things take a little longer.

 

Occasionally, a Carer will come who is difficult to get on with and isn't interested in their work, but they don't usually last very long, once they realise that it is difficult, physically demanding  and poorly paid job.

 

And lets make no mistake, it is physically hard work.  In my case the Carer needs to help me out of bed to sit on the side of the bed before transferring to my shower chair.  Although the movement of the bed helps take some of the effort out of this process, the Carer sit needs to be able to get me upright and sitting on the side of the bed.  That means that they need to be able to move me, with very little assistance from me.  Now if I tell you that I weight 96kg, or slightly over 15 stones, I think you get an idea of the strength that is required.

 

The Carers are on a time deadline, for each call.  My calls are 45 minutes in the morning, 30 minutes at lunchtime and 30 minutes in the evening.  The Carer only gets paid for the length of the call.  If they overrun they don't get paid any extra, but are expected to complete the task anyway.  If they overrun this then means they are late at the next call, and every other call after that, usually with the impact that they just get progressively later during the day.

 

The Carer travels between jobs in their own time, and at there own expense.  So whether they drive or are on the bus, they have to pay their travelling expenses, and they are not paid for this time.  So they might have 5 calls to make at 30 minutes each, but have to travel for 15 minutes between calls.  This means they will be out for 3 hours 45 minutes but only be paid for 2 hours 30 minutes work.

 

And the amount they get paid is very low.  Local authority budgets are constantly being squeezed by the governments austerity drive.  This means that the amount of money allocated to social care by local authorities, has in real terms gone down, year on year.  The amount that the local authorities pay to care agencies hasn't changed for about the last 8 years and this means that the amount that the agencies pay to the Carers hasn't increased.  This means that most people who are any good at their jobs leave the caring profession because of the low pay, which then means that the people left doing the job are the people who can't get any other sort of work.  Alternatively, you get girls increasing the number of jobs they do to make up for the lack of a pay increase, which then means they are over working and burning out.

 

But the problem, really comes from the agencies themselves.  They are there to ensure that trained staff are in place to fulfil the care needs to of the local authorities residents who need care in their own homes.  In practice they are generally there to make money, have very little contact with individual clients, and provide girls as Carers on a who is available basis, rather than who is the most suitable.

 

As I have said before the majority of the girls, and occasional boy, who have come to me have been very good, but when the office become involved, its usually a problem.

 

I have a long on going issue with my current agency, where they fail to inform me when there are changes to my Carers.  This means I am expecting one person to arrive at their usual time, but then another Carer arrives at a different time.

 

The difficulty of a new Carer coming is that you need to change your routine and how you do things.  For example, my lunchtime call is primarily for the Carer to take me to the toilet.  I get used to the Carer coming at a regular time and controlling my body to be ready to go at that time.  If the Carer changes and comes earlier or later, this then impacts on what I've got used to and trained my body to, with the obvious unpleasant result.

 

When the regular Carer doesn't turn up at the regular time, you also have the anxiety of not knowing if someone is coming or when.

 

If I am not told about the change of Carer and any change in time, I cannot prepare myself for this change.  There is also an issue of common respect and dignity, in keeping clients informed of who is coming and when.

 

So to the weekend.

 

On Saturday morning, at 7.00am, a girl let herself into my house, using the key from the outside key-safe, and came and stood by my bed, and announced that her name was Linda and she was my Carer.  I had not been told about the change of Carer, she was a complete stranger to me, she had no uniform or any form of identification from the care agency.  I was supposed to take her on trust, that she was who she said she was, and allow her to help me with intimate personal care, and to see me naked.

 

To give you an idea of the scale of the problem, since May this year, my Cares have been changed on 15 different occasions.  These might have been just for one call, one week or on a permanent basis, but on only 3 of these occasions had I been told of the change prior to it happening.  In the 10 days prior to Saturday, there had been 3 changes to my Carers, none of which was I informed of, and on 3 occasions in the last 4 months, strangers have come into my house between 6.00 and 7.00 am to announce they are my Carers without me being told beforehand.

 

It turned out that Linda was between 5 and 6 months pregnant.  As I have said before I need some help in getting up out of bed, that requires my Carers assistance with moving me. 

 

She also did not seem to know how to use a sliding board.  I do all my transfers using a sliding board, so it is vital that any Carer coming to me knows how to use one.  The Carer only needs to put this under me properly, and take it out once I have moved, but if they cannot get it in the right place then it increases the difficulty and effort in my transfer, and the difficulty in getting to board out from under me once I have moved.

 

Linda did not seem to have a very good command of English, which meant that I needed to keep repeating myself, when asking her to do things.  This becomes frustrating, annoying and tiring to have to keep telling someone the same thing over and over again.

 

Anyway we got through the morning call, and she came lunchtime and we still had the same difficulties.  In the afternoon I rang the agency to see if there was any chance of replacing Linda for Sunday, only to be told that she was the only option.

 

I was so incensed at this point that I started sending letters and emails of complaint, not about Linda herself, but about the lack of being notified of the changes to Carers that seems to happen on a regular basis.

 

On Sunday morning, Linda arrived again, and obviously didn't want to be there.  She didn't say much to me, had a very long, miserable face and generally her attitude stank.  She did her job OK, but when it came to the final transfer into my wheelchair, she couldn't get the sliding board under me properly.  I tried to explain the problem and how she should place it better, but she said the problem was that I wasn't lifting my bottom enough!

 

I politely, pointed out that as I am disabled I am lifting my bottom as much as I can and that everyone else who comes to me seems to manage.  I then asked her just to get on with it and I'd struggle to do the transfer.

 

When she had finished, I told her not to come back at lunchtime.  She left without saying goodbye.

 

This morning, I received a telephone call from the area co-ordinator from the agency, who allocates the Carers to the jobs.  She said that she had heard that there was a problem at the weekend with the Carer.  I then asked her why I hadn't been told about the change of Carer prior to it happening.  She apologised for the oversight, so I then asked her if the other 2 occasions in the last 10 days were an oversight.  She didn't seem to know what I was talking about so I told her about these events.  Again she apologised and assured me that they do usually inform clients before changes occur, so I asked her about all the other occasions, and told her that if you don't do something this many times, it isn't an oversight, its either deliberate or incompetence.

 

I then asked her how much she knew about me and what care I needed.  She thought about it and then admitted that she didn't know anything about me or my care requirements.  I then asked her if it was appropriate to send a 5 to 6 months pregnant girl to help move a 15 stone man.  She blustered for a bit, and I said that its really a yes/no answer, to which she said maybe not.

 

I then told her about the letters of complaint I'd sent and that really I thought I needed to talk to the manager.

 

The manager really didn't know what had hit him.  He is obviously a man used to making a point, being believed and not being questioned.

 

When I said to him about not being informed about changes in Carers, he swore that he was always telling his staff that they must phone clients in these situations.  I said if that was the case why wasn't it happening.  It was either that he wasn't actually managing his office efficiently and aware of what is going on, or that staff just did what they liked in the knowledge that he wouldn't know.  The alternative was that it was a deliberate company policy.

 

I asked him about the appropriateness of sending a heavily pregnant girl to me.  He said that she is allowed to work up to the start of her maternity leave and that the area co-ordinator would assess whether the Carer could perform the care tasks for each client.  I then told him that the care co-ordinator had told me that she knew nothing about me or my care needs, so how was it possible to make any sort of assessment.

 

The conversation went round and round like this for sometime, before he finally agreed that there was a problem and that he needed to look into it.   My letters to local social services and the Care Quality Commission, among others, mean that it is now a very serious complaint that he needs to ensure he deals with and responds to properly.

 

Oh, and at the end he did apologise.

 

Having Carers can make a huge impact on your life.

 

A good Carer, or group of Carers, can be a positive force in your life.  They can provide excellent, consistent care.  A good Carer doing a good job, can make you feel better about yourself, about your situation and increase your self esteem.  You can form a relationship with them that is beneficial to you both.  They can provide contact with the outside world, and especially for those people on their own, the Carer might be the only person you see each day.

 

A bad Carer can have a massive negative influence on a person.  They can cause stress and anxiety.  They won't do their job properly, which can then impact on your quality of life, and how you and others see yourself.  They rush in and out forgetting that you might need some social interaction.

 

As I've said before, I think I've been very luck with the majority of Carers who have come to me.  I hope that none of you reading this gets to a point where you need Carers, but inevitably some of you will.  For those of you who do, then I hope that like me you have good Carers most of the time.  We shouldn't have to accept poor care simply because its all that's available.  We are still people, who deserve respect and dignity.  We are all some ones mum or dad, husband or wife, son or daughter, brother or sister. But we should be treated just the same as anyone else.

 

I've had some great Carers and here is a small thank you to Jane, to Mary, to Natalia, to Jason, to Hawa, to Augusta, to Khanya, to Marilyn, to Hildreth, and especially to Margaret.  These are just a few of those great Carers who have and still do make a positive impact on my life and well being.

 

Someone once said:

 

"Any society, any nation, is judged on the basis of how it treats its weakest members ; the last, the least, the littlest."

 

On the strength of the care that is to often provided I'm not sure we would be judged to well.

An Ear Infection, a Christmas Tree, Shouting Yobs and School Run Mums

Well it's been a while since my last blog, and that's partly because I haven't been doing much - but when has that ever stopped me blogging before - and because I've had an ear infection.

 

It must have started at the beginning of last week.  I just started to feel lousy and kept feeling very tired.  At first I thought that it must be that the effects of my regular treatment hadn't lasted as long as normal this time, which sometimes happens.  I'd find myself struggling to wake up in the mornings, and on one occasion was still asleep when my carer had let herself into the house, and was then stood by my bed.  I only woke up when she said "Good Morning" to me.

 

In the afternoon I'd get into my armchair and fall asleep, not for half an hour, but for over an hour, and it would be a real deep sleep.

 

When I woke up Thursday morning my right ear was really sore to touch, and it felt like someone had plugged it up.  I couldn't hear out of it properly and despite trying to clear the ear from the bunged up feeling, it wouldn't clear.

 

I made an appointment to see my doctor, and he was able to fit me in about 10.30 am.  I made my way down to the surgery in my powered wheelchair and when I got there found that the waiting room was crowded.  Fortunately I only had to wait for about 15 minutes before I was called in.

 

I told the doctor what the problem was, and he had a look in my ear, and said, "That's going to be very sore."  He explained that I had an infection in my ear, and prescribed me some ear drops and said come back in a week if its not better.

 

Now my GP is really good and very supportive, but just occasionally, as with any doctor, he shows that he doesn't understand the limitations that my conditions impose on my life.  The ear drops need to be put into the ear twice a day, and left for about 5 minutes to soak in.  The doctor suggested that the best time to put them in might be when I was in bed and could turn onto my side, for this to be done.  I then had to explain to him that when I was in bed I can only lie on my back, and that it is impossible for me to get onto my side, and even if someone could move me onto my side, I would find it almost impossible to stay in that position for 5 minutes.

 

Anyway, we have found a way of applying the drops and I simply hold my head to one side, when I am sitting in my wheelchair.

 

I left the surgery and went over to the chemists to collect my prescription.  When I had got up in the morning it had been a lovely sunny day, and even when I had gone down to the surgery it had still been quite nice.  However by the time my prescription was done, it was starting to rain, and so I got nicely wet getting home.  And typically as soon as I was indoors, the rain stopped and the sun came back out.

 

I'm glad to say that the drops are working well and that my ear is far less sore than it was, and importantly, no longer feels blocked and I can hear normally.  I'm certainly not feeling as tired all the time, so the infection must be going.  I don't recall having an ear infection before but I never realised how uncomfortable it was.

 

You may recall from previous blogs that I am the Chairman of the Patient Participation Group at my local medical practice, and Wednesday 2nd October was the AGM for this group.  The meeting was open to all the patients at the practice.

 

Normally we meet every 6 weeks or so, and usually these meetings are held during the day, as this is usually more convenient for everyone.  However the AGM was arranged for a 7.30 pm start, in order to make the meeting accessible to more patients.

 

However, as with other years, it was only the committee members that turned up.  We held the meeting as we would have done anyway and finished about 8.45 pm.

 

Its very unusual for me to be out in the evening.  Mainly because it means having to re-arrange when carers can call, but also because by the end of the day, my energy levels are low.  However, I make the effort for the AGM.

 

On the way home I was amazed to go passed a house and see that they had a Christmas Tree, with lights, up in the front room.  I was so shocked that I actually had to stop and look again to make sure what I was seeing.  I should have taken my phone out and got a couple of pictures. 

 

The route home takes me along a main road for about 10 minutes and then 5 minutes down my road, before going up the drive and indoors.

 

As I was setting off from the medical centre, to go home, a car with a couple of lads in, sped passed, with the passenger leaning out of the window, and he shouted something at me.  The car went off and the a minute or so later, it came back the other way, and again something was shouted at me.

 

A couple of minutes later, the car went passed me again, and again the passenger shouted at me.  This happened a total of 5 times, before they obviously got bored and went home - probably passed their bedtimes.

 

What I thought was so funny about this was not the fact that they had nothing better to do, than drive passed me and shout abuse at a guy in a wheelchair, or the waste of petrol from driving backwards and forwards.  No.  What I found funny was the fact that they took so much trouble to go backwards and forwards, up and down the road, but at such great speed that all I actually heard them yell sounded like, "WWWWAAAAAAAHHHHHHHHHHH" or, "TTTTTTTOOOOOOOOHHHHH."

 

Obviously, if they had taken the time to slow down I could have explained the Doppler Effect to them, and they could have modified their speed accordingly to ensure their abuse was better heard.

 

Yesterday I had my flu jab, which entailed going to the surgery, mid-afternoon.  Unfortunately this meant that I had to contend with the Mum's going to the local primary school.

 

The surgery runs "super clinic's" for flu jabs, where they try to book as many people in to have the vaccination.  Yesterday, they had 9 patients a minute, booked to have their jabs during the afternoon.  So you can probably imagine its a real conveyor belt approach.  In one door, sleeve rolled up, form ready, directed to doctor/nurse, hand in your form, needle in the arm, roll sleeve down, and out the other door.  I was there for less than a minute.

 

On the way back home, I needed to cross the road by the primary school, just as it was going home time.  This meant having to contend with the school run mum's with their push chairs, blocking the pavements, stood around chatting or talking on their phones, but oblivious to anyone else.  The number of dirty looks I got when I asked people to move so I could get passed, and that was from those who bothered to acknowledge my existence.

 

However, it was when I came to cross the road, and run the gauntlet of the car driving school run mum's, that it really got interesting.

 

Obviously its vital to park as close to school as possible - god forbid that you might have to walk - regardless of how inconsiderately you might actually park.  So as I approached the crossing I could see two cars parked on the pavement, and on double yellow lines, by the dropped kerb I need to use.  Fortunately there was just enough gap for me to get between the cars, but not by very much.

 

I then had to try to see round these cars to monitor the traffic coming round the junction, into the road, and others coming the other way, in order to be able to cross.  As I'm sat there waiting for a clear gap, a car swings round the corner, into the road, and parks right in front of me, in the middle of the road, blocking me from being able to cross, and blocking the junction. 

 

As the mum got out of her car, I politely pointed out that she was badly parked, blocking the road and me crossing.  Considerately, she just walked off.

 

As she came back with her dear little boy in tow, I asked her if she had heard me, and if she thought she was considerately parked.  At this point she told me to, "F**k off!"  As her son, who must have been about 4 years old came round and got in the passengers side, he looked at me, scowled and said, "Fugg off!".

 

The mother then proceed to drive off, without ensuring that the precious little boy had his seat belt on.

 

It leaves a good feeling when you see great examples of good parenting and positive roll models, such as this.  If she hadn't gone off so quickly I could have asked her if she had raised a couple of young lads who had a habit of yelling abuse at people whilst speeding passed them too fast to be able to hear what they were saying.

 

And the final thing from the passed week, was on Saturday when Crystal Palace travelled to Anfield to take on Liverpool in the 7th game of the season.

 

Newly promoted to the Premiership, Crystal Palace have played 6, won 1 and lost 5.  Not the best of starts, but still not bottom of the league - yet!

 

As I listened to the commentary on the radio, it became fairly obvious that we weren't going to get much out of this game, other than a good trashing.  Liverpool had chance after chance, and it was only a matter of time before they scored.

 

I was reminded of a Tuesday night on 12th September 1989, when I had travelled to Anfield to watch Crystal Palace take on Liverpool, in the 5th game of the season.  The final score was 9-0 to Liverpool, but this didn't tell the full story.

 

It was, in my recollection, a pretty even game, where we gave as good as we got.  The big difference was that every shot Liverpool had went in, and every shot Palace had was saved, or blocked.

 

It was a bit of a depressing drive home, especially with the thought of getting home about 4.00 am and then having to be in work at 9.00 am, and all the stick we were going to get.

 

That season, Liverpool won their 18th, and last, league title, and Palace finished 15th, and avoided relegation.

 

Saturdays result was 3-1 Liverpool, but in fairness Liverpool should have had more.

 

At this point in the season, I'd be quite happy to have a repeat of out respective final positions in the league, but I can't see Liverpool winning the league, and sadly, I can't see Palace avoiding the drop.