I have been asked by Karen's husband Nigel to pass on the details for her funeral. It will be held on Tuesday 26th of June at 3pm. Portchester Crematorium, Upper Cornaway La, Fareham PO16 8NE
Both Nigel and Karen's parents have found it of comfort to know how many lives Karen touched.
Karen Sherlock - Disability Rights Campaigner
This is Karen's story in Karen's words, pieced together into chronological order from blogs she wrote, emails she sent to me intended for publication and posts she made on forums seeking help. It is unaltered apart from spacing and highlighting so that Karen herself can tell you how she spent the last few years of her life.
25th October 2010
I've just been to the website and felt I wanted to write and send my story to you.
Okay, now where to start?........From the beginning I guess.
In 1970 at the age of 3 it was discovered that I had diabetes. Now, I, myself do not remember much about this time just stories from my mum and dad telling me how bad I was, they found me drinking a bottle of undiluted orange squash in our hallway and had an inkling that something was wrong, the fact they had to hold me down to give me my injections at that age, and how they felt guilt-ridden at having to do that but also knowing it was the only way to keep me alive.
The years passed by, I did my schooling and went onto college and got a business qualification. During this time a few glitches were showing in my health and it was found that I had an underactive thyroid, so I was put on pills for that, nothing unusual there with the diabetes. I got a job as a part-time clerical assistant in a small factory. The health still pretty much plodding along. Left that job and worked as a departmental secretary to the director and a sales team. Enjoyed my teens, as you do and things were okay, it seemed.
Time passed by and I began to work in the NHS. This is where my health really began to deteriorate. As the years passed more things started to show up. High blood pressure, changes in eyesight, kidneys, cholesterol. I was referred to the eye specialists at my hospital and my eyes showed up active diabetic retinopathy and they said it needed to be kept a close check on. Unfortunately my eyes haemorrhaged and I had to have my first operation, then another two following that. I lost my peripheral vision in both eyes and some central vision in my left eye. The rest was “saved.” At the moment the condition is dormant, but I have no guarantee that it will not happen again, as is the nature of the beast.
I was finding myself off sick from work an awful lot, mostly with bad stomachs. The powers that be picked up on this and decided it was time to do something about it. I had disciplinary meetings because of my health all this time having investigative procedures done to find out what was wrong. After lots of tests and other invasive procedures the conclusion was met that I had diabetic autonomic neuropathy of the gastric system which is caused by damage to the nerves and causes diarrhoea and bowel incontinence and also nausea and vomiting of an unpredictable nature. In February 2008 I was dismissed from my job on ill-health grounds as it was felt I was incapable of working any more. This was even deemed by the pensions agency which is run by ATOS, but this apparently has no bearing on the same ATOS that deal with the benefits system. Fascinating huh? It was a scary time having to apply for benefits for the first time ever. I did not really know what I was doing, but I did it and rode the storm. Since then I have found out that I have Vitamin B12 deficiency and low iron count, along with my severe kidney disease this also means I suffer from chronic tiredness and sometimes I do not get out of bed and am unable to function because of this.
I’ve had a medical, which was a farce, never heard anything and was called for another in August this year. I have been placed in the Work Related Activity Group, but I have appealed this and am now waiting to hear something.
The true facts of the whole thing is that my health is so poor now that I could never work again. I feel so ill some days, either because I’m throwing up or on the loo (or not as the case may be), suffering with terrible stomach pains and just about enough energy to drag myself out of bed only to end up back in there because I feel so awful. I never foresaw any of this happening, but it has, and it’s not nice having been independent to find yourself so reliant on other people to help you, although I have a wonderful husband who helps me with everything. If I have a “good day” I see it more as a treat because it happens so rarely, I try to do something with it, but not much because the tiredness will hit me, sooner or later.
I think the government’s stance on disability is inexcusable. Life deals a heavy hand, and one that is sometimes difficult to live with, Mr Cameron of all people should know that, but his son did not reach the age where big decisions were going to need to be made, but then I guess he wouldn’t have had to go through the ATOS medicals we have to with a “trained medical professional” who is only there to tick boxes that suit their own opinions and not show a true reflection of how things really are. Would things have been different if Mr Cameron had to take on his son’s own future? That’s something we’ll never know.
So, what happens next is anyone’s guess, but none of us are devoid of disability striking us at any age or walk in life. A sudden accident that takes away our sight, or our ability to walk, talk or use our arms and legs. An incurable disease that will cause our health to deteriorate so that we cannot function. If this happened to any of the government members, what would they do if they were told, “you’ve got to have an ATOS medical.” Or, “off down the JobCentre you go because you can still work of course, ATOS said so?” How would that change their lives and the impact it has on everything they do every single second of their living lives?
The trouble is the government do not seem to be able to see this in their blinkered lives and opinions.
It’s a bitter pill to swallow, but some of us have to do that, along with many other pills and live with our disabilities, none of which we asked for, for the rest of our lives...................
Via emails, February 2012
I recently received another ESA50. When it came I set about asking people for medical evidence. For one complication, or another I ended up without anything to enclose so I had to draw something up myself.
When I typed it, it suddenly hit me how much my life has changed due to my conditions, how dependent I am on other people, and how much of a shock it was to me that this is how bad I am.
I wanted to show other people it, not as a “poor me” thing, but purely as an insight to what I now live with after, despite having the conditions I was living with many of them, quite healthily until just about 5 years back. Coping was a matter of getting on with it. Now, getting on with it, is simply not an option any more. A factor which the government obviously don't think is a valid reason to ask for benefits. What frustrates me most is I know how ill I am, but they do not seem to care, and they probably still won’t even after reading this.
The reason I say this it because, theoretically, on reading this I should be place directly in the Support Group, I have nothing to hide. I shall await my fate..........
My conditions affect me in many ways from tiredness and exhaustion, pain and discomfort, problems with my eyesight, danger to myself and others and my continence and vomiting problems. It makes everything I do difficult for me and on very bad days I will be bed-bound and housebound as I will find myself too ill to do anything.
On the very rare occasions I am able to go out I have to be accompanied, guided and assisted at all times to be sure I do not cause damage or injury to myself or other people. I do not go anywhere without supervision and guidance as this makes me very nervous and anxious, and means I have to have someone with me all the time. I lack confidence and get scared when going out due to my loss of peripheral vision in both eyes. And my loss of some central vision in my left eye which causes what I see to be very distorted and blurred. This has been something I have never come to terms with. I have frequent accidents, trips and falls on a regular basis, and cannot cope on my own in unfamiliar and familiar places. This even causes me problems in my own home as I walk into door-frames, settee arms, the washing machine and tumble dryer, tripping on threshold steps etc, as these are outside my fields of vision.
The only reason I would specifically leave the home would be to go to hospital or doctors appointments and I would always have someone with me to do this.
I also do not use sharp knives or hot objects due to the danger I can pose to myself and others because of this, as I lack awareness of hazards. If I am able to eat I have very basic foods which do not need any preparation and cutting or are ready prepared, as I do not like using knives or anything that will be hot because I will cut or burn myself.
My sight problems also mean that I suffer from night-blindness which means I cannot be on my own at night and need help if I need to get up in the night for any reason and need a light on to be able to see what I am doing. I also have problems with colour and depth perception. For this reason I do not use steps as I am unable to judge them properly due to being unable to judge the size of the step and the merging of colours on them. Also, due to my colour problems I need help so I know that the colours I am wearing match and I do not have any stains or marks on them. I do not wear clothes with buttons, as I cannot manage these due to my sight, especially if the buttons are the same colour as the garment as I cannot see them. I do not wear shoes with buckles or laces as I cannot manage these either.
My life is far from what could be described as normal due to the multiple medical conditions I suffer from. They have got progressively worse as time has gone on.
I suffer from Stage 4 renal disease which makes me very tired and unable to undertake any sort of activity. This includes housework which my husband does. He also does the washing, cleaning, cooking and shopping as well as working in a full-time job. I am currently being worked up for placement on the list for a kidney/pancreas transplant. However, I had heart scans done recently and I was discovered to have an unknown problem with my heart. This requires further investigation with an angiogram and will need to be resolved before I can go on the transplant list as I will be too weak to withstand the operation otherwise. All the time I am waiting for these things to happen my kidneys will become progressively worse.
My continence issues mean I frequently soil myself without knowing. This can particularly happen if I break-wind and soil at the same time. I do not always realise this has happened until I either go to toilet later for a wee to find I have already done this, and therefore have emptied my bowel, without any control over it, in my underwear. This happens on a regular basis, at least once a week. When it is particularly bad, up to 4+ times a day, when full bowel movement without control occurs. The only small advantage is as I am mainly housebound I do not suffer unnecessary embarrassment due to the fact that the only person with me would be my husband rather than someone I do not know which would be extremely difficult for me to deal with. If this happens to a stage where it drains me of my energy and leaves me exhausted I can go to bed and rest.
I am on the highest dose of Codeine Phosphate, but I am becoming intolerant to it and I have been told there is nothing else I can be put on so I am unsure what the next stage for this is.
When I am vomiting I usually do it over myself as again, this is something that happens without warning. When this happens I get no benefit from my medication as I bring everything up. This leaves me very weak, especially if it happens several times in a day, which it does frequently and I have to go to bed and rest.
Also, if I am very ill I do not have the energy to do things like dress, wash or shower as I am too exhausted to do so. The only place I can be then is in bed resting.
Walking is very hard for me as due to my extreme fatigue I suffer from great pain in my lower back and weakness in my legs. On the worst days I cannot walk far without being in excruciating pain and legs that feel wobbly. On other days I can walk a little but not very far. Just a few metres before I have to stop due to breathlessness and tiredness as well as pain.
It is not nice to suffer from multiple conditions that have such a significant effect on your life. Coping with them is very hard at times. It is very upsetting and debilitating without control over them. It means I rely completely on other people to help me through it when I am having a particularly bad time. I am glad that I have the support of my husband and family to do this as without them I do not know how I would cope.
Another thing to consider is that I am now stuck in the “revolving door of benefits”. “So, how does this work?” I hear you say. I will explain.
In brief; You receive an ESA50 form – you fill it in – you send it to ATOS – they call you for a medical – you get placed in the “wrong” group – you appeal at 1st tier stage – you go to a humiliating tribunal – you lose/ win it – you go to 2ndtier appeal – you lose/win it – you receive an ESA50..........and so it starts again............
Well that is how it usually happens anyway. Here is what happened to me;
I applied for benefits – I received an ESA50 form – I filled it in – I sent it to ATOS - I was called for a medical – I heard nothing/got lost in the system.................
I received an ESA50 form – I filled it in – I sent it to ATOS – I was called for a medical – I was told by the nurse that saw me that I should be in the support group and if I was not I should appeal and would win – I was placed in the Work Related Activity Group – I appealed – I LOST – I found a rep that was happy to represent me – we moved to a 2nd tier appeal – my appeal notes were “lost”.
I received an ESA50 – I filled it in – I sent it to ATOS.
This is the stage I am now at. How does this make me feel?
It makes me feel like I am caught up in the mill, frustrated, angry and insignificant. Going round in circles and really achieving nothing except never being placed in the right group. Working is no longer an option for me. The form is difficult to fill in, it is draining and soul destroying. You get letters reminding you that you have not sent it back yet, putting further pressure on you to return it, when you need time to fill it in as it takes so much out of you. Making sure you include every little detail, but knowing that it is probably not going to make any difference.
How does my husband feel? He says he is disgusted with how I am being treated. He sees the effect it has on me day in and day out. He knows how ill I am on the bad days. It is a ludicrous situation and he has no idea how I could be placed in the Work Related Activity Group, it is completely beyond him. He would never employ me as it would be a chance he could not take. He said I cannot get to a toilet quickly enough so I soil myself, and it would be in front of other people, or I throw up all over myself. And this happens many times on any given day. He sees me when I am bedbound and house-bound, and cannot do anything because I am so ill. He as an employer (hypothetically speaking) would not want that. Would anyone else as an employer want that? The fact that there would just be days where I would never be at work, and never know when I was going to be at work. The risk is too great to any employer to employ me.
I am in the WRAG, this means I have a year cap on my benefits, so they are due to stop soon. My only hope is that I get placed in another group and still continue receiving money. And so we go starting it all again...........The revolving door of benefits
Karen posted on the forums attached to FullFact.org for help and advice
Monday April 2nd 2012
I have found out that my ESA is stopping at the end of this month and I am not entitled to anything after this date.
I do not know what to do, I am distraught about this. I was on Contributory based ESA. Because my husband earns over a certain amount of money, and works over a certain amount of hours, that is it, we won't get Income based benefits either.
I do not know what to do, does anybody at all out there have any advice at all?
If you can help then please do.
Thank you
At this stage I am trying to find out what I can do. Something was mentioned to me about NI credits, but I do not even know how much this amounts to, or where to go to, to claim it. And just get as much help as I can.
This is extremely worrying. I did send an ESA50 back recently which I was sent, but do not know what will happen with that either. Am I supposed to be receiving a further medical assessment. I just don't know, it is all very confusing at this stage.
Tuesday April 3rd 2012
I have called ATOS today to find out what progress is with my ESA50. They have told me it has been received and is being looked at by the doctor. They have a backlog and I may not hear something quickly about whether or not I need to attend for a medical. She was very helpful and also told me that as I was not able to get any supporting evidence in with it I could bring it along with me should I be called in.
Now on top of what has happened I am now unsure of what to do as if I get called in this potentially means I should start to receive benefits again. Can anybody offer any further advice?
Thanks
Interesting to be told that, isn't it? Makes you wonder what else is going on behind the scenes.
I also contacted the appeals centre. I did have an appeal ongoing but my rep, (pardon my next outburst) totally f*cked that up for me as they did not receive my paperwork, we were given time to re-collated it and sent it in, and she came up with excuse after excuse like; her laptop wasn't working, her daughter was in hospital, she had conjunctivitis, she needed to check the paperwork again, she needed to find a specific piece of paperwork. This was despite me re-collating all my paperwork, hand-delivering it to her and telling her my husband would collect it from her, by hand and take it to my Jobcentre adviser to she could courier it up to Cardif..
They have told me to write in and explain all the problems I have had and ask for it to be set aside. If that gets refused to send all the paperwork in, with the point of law it has failed on for the 2nd tier appeal. She was very, very helpful and very sympathetic. So perhaps there is still a light at the end of the tunnel. I just need to find a new, reliable rep now.
Weds April 4th 2012
No, I did not ask to reapply. I actually had the form sent out to me in February. I spoke to my local DIAL office today, and she said they could be looking at my claim because my condition has worsened. It is all very complicated I am afraid. I had a very long chat to her today and she also said because my care needs are changing so drastically I should be receiving higher rate care on my DLA too as I am being worked up for a kidney transplant and being made ready for dialysis. She has booked me an appointment in May with them, this is their first slot as they are currently very busy, and I have to ring the DWP and get a form a couple of weeks before to take to them to help me fill in.
She felt there may be some awareness of my condition deteriorating and that is a possibility why I got sent an ESA50. And if I do get called for a medical I should definitely go as they may put me in the Support Group due to the significant deterioration in my health.
Weds April 11th 2012
Hi all
I had a call from the lovely lady at DIAL today. She has spoken to a benefits and welfare assitant at the voluntary service they deal with.
As you'll know if you've read above my ESA is ending the end of this month due to being in the WRAG and reaching the cap, despite being entitled to be in the Support Group.
He has said that I have definitely received the ESA50 because of some trigger on my health conditions, I am guessing this has come from my the Jobcentre advisor as my conditions have deteriorated and that is what has happened? He has said if I am placed in a group I will start to receive benefits again, if it's the WRAG group it will start again and be for year, if it's Support Group then it will be as long as they deem it for.
Does anyone have any info on if this is right, or not. I would like to think that it was as it will mean that I could start to received some money again? Does anybody know if this is right if placed back into the WRAG
Thanks xx
?
I sent an email to my Jobcentre adviser about why I have had an ESA50, she said "it's a matter of course, because you are due for a medical". I also said that the doctor at my tribunal, a while back said "being on dialysis automatically puts you in the Support Group". She has just told me it does not and she has 3 people in that situation who are in the WRAG. What the hell do you have to do to get some money. This is proving very difficult for me and I am getting very upset and the prospect of my ESA stopping and the end of the month, and the fact that I am still probably going to be called for a medical and have to face that again, but I still could get nothing because I'll get put back in the WRAG, and won't be entitled to a penny........ :( xx
12th April 2012, Karen's letter to Atos
12 April 2012
ATOS Origin Healthcare
1st Floor
Stephenson House
Cherry Orchard Road
Croydon
CRO 5BA
Dear ATOS
I am writing to inform you that I have recently found out I am to commence renal dialysis. This is to start in approximately 8-12 weeks after I have had an operation to open up a vein in my arm for access for the dialysis to start.
Please could this be taken into consideration when considering which group I am placed in and could you please add this information to the recent ESA50 I sent to you?
Many thanks
Mrs K Sherlock
Friday 13th April 2012
Hello all
I had a renal appointment yesterday and have been told I need to start in-patient haemodialysis.
It was a bit of a shock, but it could be of help to me because it is starting earlier due to the operation I have to have to open and join a vein in my arm to allow access for it.
Now I need to let the specific benefit departments know and I also so need to know how I should word this letter in the best way. So I am looking for some help with the right places and departments to send it to, along with a letter from my doctor. And also the best way to word the letter to them that I am writing?
Any help very much appreciated
Thanks guys and gals xx
I also found this information on the benefits and work website. I believe this is part of the new ESA rulings. Can somebody confirm this for me, the site is closed at the moment to questions, but I am sure the info is up to date. If the same info is on here that would confirm it for me?
"You will be regarded as having limited capability for work on any days in which you are receiving, or recovering from receiving, certain regular treatments: plasmapherisis; haemodialysis; radiotherapy or total parenteral nutrition. Are you having any such treatment?"
Thanks xx
Saturday April 14th 2012
Hi
Thanks for the info.
I currently have an ESA50 in which was I sent back in February. This new treatment has just come to light. I have now got a letter from my GP with significant medical info in it too. He did it as a matter of urgency and had it ready for me on Friday, after only finding out the news on Thursday.
I have also emailed my MP's caseworker, but she is poorly at the moment, and hopefully will be back Monday as they are being of great help to me too.
I was intending on sending the stuff from my doctor by recorded or registered post after it's all been photocopied and scanned into my 'pooter.
I think that should be ok, shouldn't it, as I already have a form in?
Thanks xx
Thursday April 19th 2012
Righty-ho. Hubby has sent all new info off. Special delivery to ATOS, and recorded delivery to JobcentrePlus, so we can track the process.
Now shall wait and see what happens. It will be very interesting. Want to know how they can consider someone who is in hospital on dialysis 3 times a week and then recovering on the days in-between to work. As well as coping with all their other conditions.
Will keep you posted as and when I know.
xx
Hiya peeps
You know what is going on with me, I've been keeping you updated as I go, so that's all good.
You know my money is stopping at the end of the month due to the capping the government have made and I cannot claim anything else as my hubby works.
I just need a little bit of clarification on something though.
If I have an assessment/get a decision without assessment and I get placed in the Support Group am I right in thinking I will start to receive money again AND if I stopped receiving money does it then have to be backdated?
Any info much appreciated.
Thanks
xx
Ok, Thank you very much for that.
That was as I thought it was from trying to understand the new Bill
Now to wait and see what happens. Be interesting to find out what the new info brings, I was eligible for the support group even before my conditions got worse, and there were new ones, but I was still put in the WRAG............ xx
29th April 2012
“Get up, stand up. Stand up for your rights. Get up, stand up. Don’t give up the fight”…… Bob Marley
I’ve written for this blog before, so was more than happy to do another one.
Right, where are we now and what is happening to me?
Well, let’s start with the health side of things, as they have moved along since last time. Here’s a quick reminder of my medical conditions;
o DIABETIC AUTONOMIC NEUROPATHY (GASTRIC, CAUSING UNPREDICTABLE AND SEVERE DIARRHOEA), GASTROPAERESIS (CAUSING UNPREDICTABLE AND SEVERE BOUTS OF VOMITING), DIABETIC RETINOPATHY, PARTIALLY SIGHTED (LOSS OF PERIPHERAL VISION IN BOTH EYES AND SOME CENTRAL VISION IN LEFT EYE), HEART CONDITION, CHRONIC KIDNEY DISEASE, VITAMIN B12 DEFICIENCY, ANAEMIA, HIGH BLOOD PRESSURE, HIGH CHOLESTEROL, UNDERACTIVE THYROID, CHRONIC TIREDNESS DUE TO COMBINATION OF MULTIPLE MEDICAL CONDITIONS, ASTHMA
I don’t do this for any other reason other than to just jog memories, although the more astute will see there are a couple of bits of info missing from the list, that is because there have been some changes.
Firstly, there has been an awful lot going on with my kidneys. I have a fantastic renal nurse who has been helping me with lots of things. What I am moving closer to saying is that I am going to be starting dialysis soon. I first have to have an operation to raise the vein in my arm. I could not have the “normal” operation as my veins in the lower half of my arm are useless, and there are none suitable for doing this with, so I have to have a more complicated operation, but it means I will have to start dialysis 6 weeks after this has been done, and another vein may not be available. As my renal nurse said “You’re damned if you do, and you’re damned if you don’t”. How did it make me feel? Daunted and shocked. Like a rollercoaster ride, full of ups and downs, hurtling towards the inevitable. It had been sat in the back of mind for a while that I would need dialysis, I just didn’t expect it to be at the front of it so quickly. I am preparing myself for it, and I will cope with it, because I have to.
Also I have to have an angiogram as I have a heart problem. All I know at the moment is that my heart is not being supplied with enough blood, so I cannot undergo an operation that requires deep anaesthesia. My renal nurse, (there she is again) has said she wants me on dialysis before the angiogram as it is 90% certain it will make my kidneys worse as the dye that is used damages them further, and she wants the function that I have left protected before that happens. I don’t like the thought of it, but unless my heart gets sorted out, I can’t have the transplant operation and that’s what it’s all about, after all. But, in the meantime I still have poorly kidneys. I was supposed to be having a double kidney/pancreas transplant, but it has now been decided to try for the kidney transplant first and do the pancreas one later. This came as a bolt out of the blue, so going to see the surgeon for an explanation of this, waiting for an appointment for this.
So, currently the health road is still very much uphill, but it looks like there is a light at the end of it.
Now as for the benefits side of things. That’s become a thorn in my side.
My ESA is being stopped……………
Now, I have turned over in my mind how they can do this to me. Where it is going to leave us money-wise and what we can do about it?
The answer is; I don’t know.
I am no entitled to a penny more due to having a husband that works too many hours and brings in too much money.
I am worried and frightened, I do not see how they can just snatch this away from me. I am chronically ill and I am never going to get better, not even with the transplant will I feel better, all my conditions cannot be magically cured.
Also, I sent an ESA off a little while ago (February) and I have just forwarded lots more information that my doctor has compiled including some of my medical records and details about me going on dialysis and my other debilitating conditions. I sent this Special Delivery, I have tracked it and it has been received.
I fail to see how they can place someone who will be on dialysis, and in hospital 3 days a week with recovery days in-between in any group other than the Support Group. After all, where can I possibly work or even get involved in “work related activity”, anybody? No I thought not…….
That’s because what the government are doing is totally unbelievable. Stripping the most vulnerable of the essential benefits they need. No thought for the effect it will have. Just throw them on the scrapheap. Don’t worry if they can’t feed themselves or heat their homes, or pay for taxis to take them places because they cannot walk anywhere. No, that doesn’t matter, they are leeches on society.
The thing is, we are not. We need this money to have some quality of life, not scrimping and scraping to get through one month to the next, not being punished for something we have not done.
Nobody wants to be disabled or chronically-ill, it is horrible. So ill that you cannot even manage to make a drink, or get out of bed in the morning or even to enjoy what’s going on around you.
After 22 years of work, up to a stage where I was so ill I was away from my job, more than I was at it, my company had to let me go. I was costing them more money to pay me for being away from work than at work and I was only working 2 days in the end. I paid my NI for all those years, and yet the DWP suddenly have the right to call you and tell you that your money is being stopped because your year is up and you haven’t paid enough NI contributions. I’m sorry, but I have.
They can’t give you any advice on what to do next apart from “apply for income related benefits or go on jobseekers allowance.” Okay then, show me where the jobs are and which employer will take me on then? They can’t, and so we are back to square one again. How do we cope with this loss of money? They can’t answer that, apart from giving their very basic, useless and empty words of advice.
Read the words from the Bob Marley song I shared at the top of this article. And remember them.
We need to be passionate about standing up for our rights, and if we can make enough noise, and get enough people to listen then we can overturn the inhumane changes this parasitic government have made. If nothing else, we do still have hope and our rights on our sides………………..
Thursday May 31st 2012
Hello all
This is just a little note to let those who are interested know that I have been placed in the Support Group.
It has been a long time coming and a big fight, but I have to say I am relieved. Now I can concentrate on me a bit more instead of all the crap I have been going through. Now all I have to do is get things sorted out with the hospital etc!
Thanks all xx
Yes I am. It is going to make such a difference.
The money side was never, ever the issue. Being placed in the right group was. And the fact that I have been will help me so much.
Thanks for your kind help, support and advice honey xx
On friday, finally, much my anticipated appointment at Voice Clinic arrived. It's not before time...it's now just shy of 8 months since my voice decided it was not fit for work and packed up. I'm beginning to suspect that my body is conspiring against me in a non consensual piece of activism to prove that the 12 months time limit for Contributory Employment Support Allowance is a nonsense. This fits perfectly with the Coalition's claims of consulting disabled people about these reforms...campaigners can't find any of these properly consulted people...and my body's recollection of consenting to this is about as clear as the now ultra fashionable 'Leveson Dementia'*
Although its been almost 8 months to see the voice specialists, the NHS has been busy in this time. I've bounced around gastroenterology with a detour through ENT, respiratory medicine, radiology and rheumatology. Unfortunately I don't think these are the same 'ologys' my Jewish grandmother would have been proud to brag about. Ah choice. It's a wonderful thing in a modern health service. Politicians obsess over choice and 'rapid access to care' whilst those of us with the experience of actually being ill and needing services know the most important thing is to see the right specialist in the correct clinic. Sadly that is not something even the most expert patient can always handle well.
Back at the tail end of last year, I went to see my GP. Well, after a couple of phone consultations and courses of antibiotics I actually saw him. Being an expert patient I knew I needed to be seen urgently by speech therapists, so I requested referral. My GP put that referral through...but waiting lists for speech therapy frequently last longer than a year...so I'm still waiting. My GP also made a prompt referral to an ENT specialist, which is standard procedure in acute, unexplained voice loss. Except choice reared its ugly head, and for some reason no-one's ever quite been able to explain, instead of receiving a choose and book form my referral defaulted straight to the local private sector provider. When I phoned them to ask to be put onto an NHS list that wasn't possible. So my initial appointment was at the local private hospital. I was suspicious that the charming chap who'd never heard of laryngeal malacia wasn't an ENT consultant but a GP with Special Interest at the time...which seems to be confirmed by neither of the two local ENT doctors I've seen since being able to work out who this man was. The private sector clinic tried to arrange a review to discharge appointment before I'd seen speech therapy, which was pointless, so I had to request to be taken off their lists and referred directly to the NHS clinic.
See, choice is great. When acutely unwell and unable to speak above a painful whisper what you most want to spend your time doing is phoning round a mix of private and public sector bureaucrats attempting to find out who's clinic you should be seen in, where and how long it might take to get there.
In between New Year and now I've been seen at three different hospital sites, with a fourth to add to the total next week. Next week takes the total of specialties to six including General Practice. I love choice! Imagine if I'd had the knowledge to make the choice of going to a specialist voice clinic back in November? Its such a shame that neither this expert patient or my GP knew back then that that was the correct choice. But, people who haven't previously had this experience happily also won't have the experience to work out they are in the wrong speciality or clinic so early on in the process and can be delighted with their options to choose
Back to the actual voice clinic. It was very impressive. At the local district general hospital there was the requisite dementing old lady sat in a wheelchair with a bored carer from the nursing home to accompany her. This is a standard fixture in almost all NHS clinics...possibly even paediatrics, as it'd be unfair to leave them out of the fun and it's not unusual to see a parked elderly person left alone for a while somewhere. The charming and clearly somewhat batty elderly lady was fascinated by the BendyBus and wanted to know everything about it. I didn't feel I really needed the carer's repeated demonstrations of eyes rolling and finger pointing to the head to tell me this old lady had lost touch with reality some time ago. But I was very much consoled by the old lady doing an identical 'she's nuts' performance about the carer every time she was distracted. The receptionist was also in on this waiting room game of charades, but she was obviously the type of NHS admin staff that never get the praise they deserve, demonstrated by her offering to make the waiting patients and carer a cup of tea, and going off to get us all drinks of water. Sadly, this kind of NHS support which has been relied upon more than anyone knows for decades is dying out. Not because people are unkind, but because it requires years working as part of a team for these invisible caring supports to be understood and put into practice. Shorter term contracts and staff frequently moving posts to cover any empty position might seem reasonable on a balance sheet, but it's at the cost of all the impossible to quantify caring touches that properly treated, fairly paid staff carry out daily.
I was in the waiting room for about 20 minutes. A new patient might have got cross and wondered what the delay was, but being an old hand I understood that part of a multi disciplinary clinic's function is to take time to review the notes and discuss before the patient comes into the room. I was seen by an ENT consultant, a specialist ENT nurse and two specialist speech therapists. The first thing I discovered was that the only reason I'd ended up in voice clinic was that the respiratory consultant had ignored the PCT's obsession with only allowing GP's to refer to consultants and managed to get the referral through himself. For some reason that makes no sense it costs significantly more for consultants to refer to other consultants than for GP's to do so. Which is a pity because I bet no-one factored in the cost of repeat GP consultations to make and chase the referral. Ah for the good old days when consultants were allowed to write a letter to other consultants.
The second thing I noticed was that this was another impressive example of a well run NHS team. Whilst funding and staff levels impact on all clinical services, across the NHS it tends to be the attitude of the consultant which dictates whether it's a happy, well organised clinic or not. When specialist staff from different disciplines work together regularly, like any other team they learn how each individual functions and thinks. This is really difficult to spot if you don't have a great deal of 'being a patient' experience but easy if you do. It's also difficult to know how valuable this knowledge is until you're in the middle of it. The ENT consultant led the medical questions, the speech therapists the functional queries and the nurse looked after all of us and the equipment.
A tube down my throat and up my nose later we were all still trying to work out what is going on. The consultant immediately endeared himself to me by admitting he knew very little about Ehlers Danlos Syndrome, then listening to and immediately grasping my explanations. His concern, a bit like my rheumatologists and my 3am mind's is that this has a very 'neurological' appearance to it. My tissues are generally lax and floppy, but I've developed very tight areas of muscle spasming too. For me, that fits with the clinical picture of EDS as I understand it, but it's a world away from the five minute 'its a joint disorder' lecture that older medical students learnt from. Fortunately this consultant was of the 'immediately gets it' species so it wasn't difficult for us all to explore the underlying issues properly.
There was alot of talk about how my 'amazing insight' would make this much easier a situation to address, and some assurances of hopefully being able to improve things a bit, but definitely no mention of full recovery. That was an elephant in the corner of the room dressed in a pink tutu laughing at us all! After 45 minutes with the multi disciplinary team, we had a plan. I'll have to go back for some special 'tube up the nose to video as you eat' test which sounds like the dinner date from hell. I'll also be seen by the speech therapists and then back in the next multi disciplinary clinic. I got the impression that the consultant was delighted (in an appropriate way) to have an 'interesting patient' to think about.
So hurrah for patient choice. And thank goodness for a consultant who wasn't supposed to refer me to another consultant on the basis of cost not only did so, but knew which choice to make for me.
*Like Lewy Body Dementia, only much rarer and soley induced by judicial questioning.
Have woken at 5am grumpy, stiff and sore, to a wet, chilly day more suited to October, that great British medication, tea is yet to improve my mood. I could write a blog bleating about the lack of physio and all the 'too many things' I've had to do in the past few months, but underneath my grump it's all Big Society stuff spinning around my head.
Cameron's flagship Big Society ideal seems to have slunk off - I imagine it's hiding behind the bikesheds, chainsmoking wondering why no-one's come along to tell it off for not pulling its weight or ask it about the Big Society bikeshed hiding scheme it instituted for ministers. It's probably cross that the silly boy first to participate in its training didn't listen to sensible advice about shelters or cover, instead opting for the ministerial version of babies hiding behind their hands by thinking a tree would render them invisible.
But out in the real world, the micro society is doing it's job impressively well. It wasn't very obvious over the weekend as the media obsessed over one particular old lady, and the country rewarded her lifetime of hardwork by making her and her elderly husband stand in the cold and rain for hours. It occurred to me that this was a precise reflection of our changing social attitudes, fitting perfectly with the judicial ruling that it is 'dignified' for a different old lady to be left on soaking continence pads all night, despite being continent because it's too expensive to pay for someone to take her to the loo. They are both pretty callous ways to treat the elderly, regardless of whether one is wrapped up in all the diamante bling a nation can muster.
It was the micro society I thought of last night though. With some friends and neighbours we went to celebrate a 50th birthday with dinner in the local pub. The ages ranged from 15 upwards, there were mothers and daughters, teenage relatives and their friends coming together not just for a birthday but as a community. Amongst the fun, cake and laughter we also managed to discuss a neighbourhood issue and how we intend to address it as a group.
The hot topic of discussion for the evening involved firemen and nudity. But not in the same anecdote. Sadly. One of my neighbours has hurt her back quite badly and has been plunged into the world of repeat GP visits, pain and strong prescription medication. Just getting to the doctors was a major issue, and by the time she arrived she was collapsing with pain. Following much prescribing and only a small amount of being helped up by several GP's she was ready to go home. Staggering outside she found herself unable to make it to the car. Fortunately the GP's surgery backs onto the fire station, so a burly fireman appeared in no time to help. At which point my neighbour realised that she was sobbing, hadn't showered for days and unable to speak properly....but that she had been on just the one date with this fireman last year! Ah the micro society can be cruel.
After much discussion amongst the growing crowd the firemen decided upon a solution. They picked my neighbour up and lifted her into one of their vehicles to drive her home. Someone else following to bring my neighbour's car home. To some of our huge disappointment and frankly utter disgust we slept through the entire event and conceded for the first time that Nick Clegg might have a point about alarm clock Britian...even if he hadn't intended it for fireman perving on purposes.
It's not just in seaside small town land that the micro society is thriving, it's definitely followed me to London on my last few trips. Without qualifying for social care or access to work I have no way of employing a personal assistant...or in simpler terms, a wheelchair pusherer and keep Bendy out of too much troublerer. The amazing Declan Gaffney often comes along to fulfil that role but it's alot to ask someone to give up an entire day working, possibly more. So, this time I crowd sourced help from twitter again. It's very nerve wracking with a side order of can be humiliating scrounging around the internet for a stranger to come and look after you, but I have been incredibly lucky so far not just in avoiding outright psychos but in meeting some amazing people.
On thursday morning last week two women who I'd never met or interacted with online prior to asking for help turned up at my hotel for 9am to help me until I went home. One had the morning off work, and the other is currently a carer who had a day to spare. They both had connections to the world of disability, free time and wanted to help out. It was a fantastic experience meeting them both, Loretta and especially Sara I can't thank you enough. The micro society provided the help I needed and the priviledge of meeting such great people, but it also gave me the unexpected insight into how a world with full time support might be. I wonder if Maria Miller might like to come and PA for me one day - its an eye opener about how inaccessible and difficult the country can be for disabled people. I know a great supposedly but not actually accessible restaurant to take her too, and you never know, they might clear the mouse droppings out of the disabled loo or move the multiple obstructions to access it if they got wind of a ministerial visit.
And that other anecdote? That'd be the getting caught sunbathing topless by the teenage boy next door. But I'm not sure how that fits in to micro societies so we'll gloss over that particular incident..
- A major international disability arts and human
rights festival set to take place during this summer’s Paralympics could
be forced to scale back its plans because of a drop in private and public
sector support for disability culture.
- Government plans to slash the funding and powers
of the Equality and Human Rights Commission and weaken equality laws have
been condemned by disabled union activists who work for the watchdog.
- Disabled people are facing “unprecedented
attacks” because of the government’s “austerity” measures, union activists
have heard at their annual conference.
- A leading disabled activist has come under
sustained attack from unions for writing a report they say has given the
government the political cover it needs to close 36 sheltered factories.
- A Supreme Court judgment could make it easier for
thousands more disabled people to access the care packages they need,
legal experts have suggested.
- Key Labour figures have squashed hopes that the
party might call for the controversial “fitness for work” test to be
scrapped, despite GPs demanding that it “end with immediate effect”.
- The government is facing legal action over its failure
to introduce a vital code of practice that would make it easier to protect
disabled children from discrimination at school.
- A shadow minister has pledged to offer disabled
people “direct access” to three key Labour figures as part of a new review
of her party’s disability policies.
- The government has delayed the publication of its
new disability strategy for at least three months, it has confirmed.
