Wednesday, 19 December 2012

Wheel Chair Accessible Vehicles - Motability Scheme

If you asked a person in the street to comment on the Disability Motability scheme, they would make comments like its a scheme that gives out free cars to people with varying degrees of disability. If you have a severe mobility problem and are confined to a wheelchair as my Hubby is, you would become very exasperated at the fact that this is very far from the truth.

It is true for the cost of your DLA mobility component if you do not need a specialised vehicle you can indeed get access to borrow a new vehicle for 3 years at a time. For that you can get very ugly looking but functional  very underpowered vehicles , such as the Renault Kangoo, various Fiats, Skodas etc just for the cost of the allowance. I say borrow as of course you will never own it.

But should you need to sit beside your driver in your electric wheelchair because of comfort and medical issues, expect to find big problems finding a suitable affordable car. Electric Wheelchairs tend to be taller than manual chairs so maximum headroom is needed which automatically pushes you towards cars such as the Kia Sedona, Chrysler Voyager, Peugeot, VW & Toyota People carriers. All of which come with hefty up front payments starting from £10k up to £35k for the Chrysler. Problem is though you would have to find this upfront payment every 3 years and the car still would never be yours. Guess what, as well, double whammy, if you are that disabled you probably have not got that sort of earning power to pay for it in the first place.  Doh!!!

The scheme does run a grant fund to help out some, but the covenants and conditions are so restrictive to make getting this not worth the hassle of applying for most.

So we have a Motability scheme which is to my mind is not fit for purpose, as though it does help those with lesser disabilities it has no transport solutions for those that are severely disabled and need bigger cars to transport themselves up front with the driver, that do not have enough income or savings to find large sums of money every 3 years. Especially when we have to buy electric wheelchairs and other equipment too.

Only suitable car for headroom we have found is the Kia Sedona which they have stopped making....we cant afford it so playing the lottery only option.

Thursday, 6 December 2012

How to make £64m non claimed lottery ticket help the #disabled

So the £64m Euro winnings was unclaimed.

I would like to make a suggestion as to how it is now spent. I propose the setting up a company called, Constructing  Accessible Social Housing Ltd. This company will build up to 250 fully accessible properties around the UK. Employing a targeted percentage of disabled people in all aspects of the company.

The potential tenants of these properties would apply with evidence as to why they need such a property. All applications will be then vetted before their names would then be put into a draw to have a purpose built home for their specialist needs. All of the people that apply even those that are not lucky enough to get one of the first 250 properties will have a study carried out as to why their housing needs are not being met, where they live in the country so that a targeted campaign can be started by the company to name and shame local authorities and areas that are not looking after their disabled people.

The company would have a teaching remit, to educate local authorities, local builders and local housing associations as to what an accessible home needs to look like. I have personal experience of a local council that thinks disability accessible is an old peoples style 1 or 2 bedroom bungalow with slightly wider doors and a wet room provided.

The Rent collected from the properties plus any other funds that can be gained in association with other disability charities would be used to build further properties and maintain the housing stock.

This would also have the knock on effect of adding a little boost to the UK economy. Building up specialist expertise in building accessible housing, also the company would try and incorporate environmental green technologies in home heating, materials used, recycling of water etc. This would hopefully off set the extra carbon footprint and energy use that the disabled generally need to use in extra space, heating, utility use etc.  Create jobs and generally put the money to very good use.

A measurement of a civilised society is how well it takes care of its vulnerable, the UK could do better !

Thursday, 15 November 2012

An Idea - Carers Virtual National Strike

Every year Carers continue to be ignored by subsequent governments and other authorities. Carer charities try and represent the interests of Carers but have in the eyes of many Carers have failed to really get the message across to those in power. This paper sets out an idea to really highlight in a new and bold way the real value of Carers in society, what this diverse group adds to the UK economy and the very fabric of what makes society hang together in a cohesive way. This campaign will dramatically bring home to ”Jo Public” and those in power that Carers should not be ignored, they should be cherished and  looked after.

Problem Statement
Why are Carers problems ignored and why are they taken advantage of by society?
·        They are a diverse group with many different priorities and agendas.
·        They do not go on strike because it would harm their Caree.
·        Which means it is easy for them to be ignored due to a lack of economic / political power.
·        They do what they do out of love or sense of duty for their Caree.
·        They feel obliged by society and or peer pressure to care.
·        Many are hidden away at home and do not shout about the fact they are a Carer.
·        Some Care around the clock and are unable to leave home to demonstrate.

So how can we bring home to the nation what life would be like if we Carers were not here?

The Idea 
The idea is to conduct a “virtual” Carers strike for a week. Using student film makers to co-ordinate the story flow, and real Carers input to specially set up You Tube, Facebook, Twitter pages and the media. Create a partially interactive film documentary that highlights day to day how the fabric of UK society would break down without the daily interventions carried out by the nation’s 6 Million Carers. The 7 daily films would be in the format of various news stories documenting the growing chaos at our police stations, fire brigades, NHS Hospitals, nursing homes, care homes, social services,  health authorities, coroners, funeral parlors etc. It would use statisticians / researchers to ramp up the projected death toll / serious injuries and cost to the UK plc.

For maximum impact permission needs to be gained for the film series to be shown in the houses of parliament, local shopping centres, GP’s surgeries, hospitals and other public places. Charity personnel and volunteers need to be available at these locations to explain the campaign, selling Strike packs with T-shirts (I AM A CARER,  I AM ON VIRTUAL STRIKE  or I SUPPORT THE CARERS’ VIRTUAL STRIKE) , window posters, and a leaflet explaining the action. Hopefully the national media would help as well. 

Summary Report, Impact Statement.

Finally a report needs to be pulled together that details what would have happened if the strike had happened for real, mounting death toll, over stretched local resources, cost to the UK economy, hospital closures, over full care / nursing homes, detailing the story over the 7 days. This needs to be sent to all MP’s and members of the House of Lords with a list of Carer demands.

·        The formation of a Carers bill of rights.
·        The right to a fair remuneration for the work they perform.
·        The right to have respite.
·        The right to not have to work unsupported for 24 hours a day.
·        The right to have a decent night’s sleep.
·        The right to a supportive / flexible / individual centred medical system for themselves and their Caree.
·        The right to have paid, decent quality care-workers sourced to help with caring.
·        The right to opt out of caring so that one can work.
·        The right and where with all to legally challenge Social Services / Health Authorities when they fail to provide adequate services.
·        The right not to be bullied and harassed by authorities.
·        The right to have their human rights preserved and protected.
·        With the Carees permission, the right to be listened to by all regarding the health and well being of their Caree.
·        The right to live in decent suitable housing.
·        The right to have specialist skills learnt during caring nationally recognized in qualifications.
·        The right to special entry requirements / funding for home based distance learning courses.

I could go on ….

I hereby submit this proposal to my readers as a start to get people thinking out of the usual boxes. As a 24/7 Carer myself I can not do this alone. 

So finally I say LETS DO IT AND SOON…… 

Angela Cavill-Burch
twitter onmybiketoo

Saturday, 27 October 2012

Care Provision, what should it be ?

I belong to a group on Facebook called "Carers Solidarity" where we discuss various issues we as carers come across whilst caring for our carees. Most of us were appalled, some like myself feeling physically sick whilst watching the Panorama program on Winterbourne Care Home in the Bristol area. Now in the news this week the perpetrators of the abuse got their comeuppance.  

So the Question was asked "what sort of care you would actually like to see, what you think would work and what you may have witnessed does not work". 

So for what it is worth here are my thoughts. 

Firstly I feel I should give my background to help readers to know where I am coming from. I have an elder brother who has severe learning difficulties having sustained brain damage aged 2 from TB Meningitis, he lives in residential care. My mother is now elderly is mobility restricted due weight gained from taking various anti-psychotics and anti-depressants most of her adult life and lives in the community in between emergency hospitalisations. Then there is my dear Husband who contracted a Staph infection in 2007 leaving him a partial Tetraplegic (loss of function in all four limbs) , I am his full time carer. So I come to this from a variety of life experience.

I think everyone would agree that a measure of a successful society is how it cares for its elders, sick, disabled and disadvantaged. So how should the UK authorities ensure that this is the case in the UK?

Identification of those in need.

This can and is done to varying degrees of success by , GP's, LA's, Social Services, Hospitals, family, friends, benefit departments and District Nurses. Once a need has been identified it will  be assessed by one of the appropriate agencies. This works quite well when the person concerned fits neatly into one box of need covered by one agency, where it falls down is where, there are needs that fall across categories, for example , health care + housing + social services help. These more complex cases need to be allocated some sort of advocate that knows the various local and national systems. This person must have some clout to get things moving.

Identification of what help is needed.

Once an individual or family unit has been identified and someone has been allocated as the person to co-ordinate the package of need provision. The client(s) should be assessed to what is needed, people clearly identified as to who is responsible for providing with time scales. All of which should where ever possible should involve the client(s) to allow for personal choices and preferences to be taken into account. What sort of help:- 

  • social care provision, costs, funding options, where to be provided, type of care.
  • NHS Continuing care worker provision, how much, how many, where etc.
  • Is a Care / Nursing Home appropriate.
  • How far away would housing, care home be away from rest of family
  • Is current Housing fit for purpose.
  • How much should the GP be involved over and above the norm.
  • Are there any other agencies involved.  
  • Does the Client have all benefits entitled to.
  • Is there a need for on going physiotherapy.
  • Is there a need for supplies of equipment and consumables 
  • Is there a need for on going psychiatric assessment and counselling. 

From this an individual's / family's care package should be put together for every client that takes into account their needs now and in the future. Each item should have a lead who is charged with delivering the identified items, with time scales. This then becomes a care package that should be evolved with and for the client, being reviewed on an agreed time scale. 

The Care Package.

Once this has been put together pulling together all aspects of care needed, including, medical, housing, care provision. The Advocate should be tasked with reviewing the various elements on a regular basis as agreed with the client (or clients representative). People tasked with sub items in the plan should have their job evaluations judged against the delivery of those items in a timely manner, not how much money they save the department by non delivery of the needs. 

Accountability when things don't go as planned.

Nobody likes to be told they are not doing a good job, but we are dealing with peoples health and safety here, so people charged with supplying these services must be held accountable when they fail to deliver against the agreed plan. The client(s) must have someone they can go to if they feel they are not getting the help they need, they must not be left on their own to try and fight the many complicated systems that are in place. This issues must be resolved quickly. The allowance of Whistle-blowers must also be an integral part of these organisations. 

Care Agency management and the CQC  must take more care about who they employ, what they train them in and on going supervision and audit. 

Health Authorities must have procurement staff that are accountable when they fail to provide services that are set out as being needed. 

Housing authorities need to be accountable in ensuring that their areas have sufficient accessible housing, special needs housing, dementia housing, assisting living accommodation etc. They also need to be more flexible when they are told their standard offering does not fit the particular situation.  


I tend to agree with most of the findings of the Dilnot report. Those people, (the current over age 50's) that were under the impression that they were paying their national insurance so they would be looked after, should have their moral contract with the government honoured. Future generations I guess we know, it will be a different beast for us we will have to pay for more at a lower thresh hold level than at present. 

For goodness sake UK Government make up your minds what its going to look like so the rest of us can start paying our dues to make sure we have someone to look after us in our retirement, and ill health.

In Summary

Some looking at this may feel this is already in place, well if it is it ain't working. Care in the community from where I sit is a very unfunny joke. 

  • Hubby has been provided care workers for only 6 months out of the 37 months since supposedly covered by continuing health care.
  • Provided with totally unsuitable care agencies for Hubby's complex needs.
  • Care workers provided have not been vetted sufficiently.
  • No cognisance taken of the risks to my health as his carer.
  • GPs not pro-active in ensuring health and well being.
  • We have been on the housing list for nearly 2 years without suitable accessible accommodation being found. 
  • We have had various ups and downs getting Hubby appropriate medical care.
  • Social Services & PCT failed to help me see my dying father or attend his or two year previous to that my grandmothers funeral.
  • My mother has to fight for every bit of social care she gets. Been a victim of enablement policy and 15minute visits.
  • My eldest LD brother is nearly 100 miles away from the rest of his family making keeping contact is near impossible. 

It is Time to adopt a patient / client centred service for the provision of care in all its forms in the UK.

Wednesday, 10 October 2012

Accessible Housing: Back Home, but isn't our home.

We returned "home" on the 20th September, 3 months to the day that Hubby was admitted to hospital. I put "home" in inverted commas as we have never made this place our home. It is the place where we sleep, eat, the place, the authorities have hidden us away in the community, so that they can forget we exist. My usual mantra, Care in the Community = no Care at all.

I have resumed my search for accessible housing. The council list never seems to have anything suitable, the rooms are always too small to accommodate safely the equipment we need to use. We return to the stench of cigarette smoke from our neighbour which has permeated into all our fabrics in our flat. The Liaison Nurse from Stanmore, visited  last week and tells me her clothes stank of it on her return home. I wonder what is that doing to Hubby's already fragile breathing, and also to me the daughter of father who has recently died of lung cancer. The Housing Association has put a lemon fragrance air freshener in the hall way, but it doesn't eat the toxic smoke that is infecting and assaulting our lungs. Hubby has been trying to shelter his fragile back by using his electric chair even though it is very uncomfortable. We tried to use the new manual one supplied by the NHS but it is too big to use in our tiny 2 bed first floor flat. The bedroom door was the worse obstacle as it only just squeezed through. So it has been stuffed in the bathroom with the hoist we rarely use because of lack of space and carpets.

Hubby has now hurt his right ankle banging into the many barriers to his progress in this flat. 

So rather than fester on all of this I write a letter to the council setting out why they need to move us to more suitable accessible accommodation . Not heard anything from them yet which either means the letter has gone in the bin or maybe someone might review our case again and help us find somewhere more suitable. 

There is another dimension to our unsuitable living arrangements in that looking after Hubby using careworkers is near impossible as they don't have access all around his bed to use sliding sheets and the like. Using a hoist will also be difficult for them as well, because of the lack of space and the carpets.

This causes a vicious circle as without careworkers I can not get back to work to stand a chance of providing a suitable home for ourselves. This is downward spiral that the politicians don't seem to understand, it takes someone giving you a break in one area to ease up a lot of the other challenges. 

Our case highlights again the need for integrated services for the disabled. Medical Need+Housing+On going Care.  

Getting back to politicians, I was very dismayed to read about proposals to stop housing benefit to the under 25. I write here my own example of how having the right to this as a 17 year old, helped me get away from a dysfunctional family life, started my career and saved my sanity.

I tried to stay on in the sixth form at school , but found out that due to my family caring duties, the strain of studying for my O'Levels I was burnt out and could not devote enough energy to my studies. I therefore made the decision to look for a job, which I was very lucky to get as an entry clerical post in the civil service in a benefit office in a town 20 miles away. To grown up readers with cars that does not sound a long way away, but to me that meant getting up at the crack of dawn travelling by train to start work at 8am. The train fare was extremely expensive, so I used to cycle to work as many times a week as I could, but soon realised that although I loved cycling it was not conducive to arriving at work fresh and ready for a days work. By the time I had paid my fares, food at work and given most of the rest over to my struggling family, I had very little to show for my efforts. I then decided that for my own health and well being I had to make a break of it and live in the town where I worked. I saved up enough for a deposit and with the help of my future husband moved to a bedsit in the town, just up the road from Margaret Thatchers fathers shop in Grantham. I had housing benefit help with the rent, but £60 per week civil service pay didn't go very far after paying  utilities, so I usually survived on £15-20 (we are talking of the late 1980's) for food plus extra vegetables my hubby gave me. Even though money was very tight I was free from my dysfunctional family dragging me down, free to get my head around what I was going to do for the rest of my life.  

M.P. Tebbitt told the youth of my time to stop whining and get on your bikes, so I got onmybiketoo .

So I beg politicians of today heed my story , do not stop the mobility of our under 25's they need more than ever today to leave their homes to find work, Housing Benefit will be an enabler for them to do this.

Friday, 24 August 2012

My Superman Hubby

Today the drains were removed from Hubby's back. The dressing removed revealed an S-Shaped wound  so we all knew he is  SUPERMAN, now he has the S to prove it.

Bit of confusion today over blood tests as he had a test yesterday but needed another today due to increased amylase levels from his pancreas. He feels okay so hopefully nothing to worry about.

Someone was asking about caring schedules, for me at the moment. Always very difficult to document this as where do I start as there is not much sleep to de-mark a start and end to the day. so here goes,

23:00 - turn OH onto left side.
00:00 - turn onto back, help brush teeth, collect urine via intermittent catheter, help clear chest for sleeping.
00:20 - turn onto right side.
05:00 - turn onto left side.
06:00 - turn onto right side, collect urine via intermittent catheter.
07:00 - turn onto back ready for breakfast.
07:30 - Breakfast & bed wash
08:15 - turn onto left side
09:00 - turn onto right side, do a bit of physiotherapy.
11:00 - first antibiotic.
11:40 - second antibiotic.
12:00 - collect urine via intermittent catheter, turn onto back for eating.
12:15 - eat.
13:00 - turn onto left side.
14:00 - turn onto right side.
18:00 - turn onto back for eating, collect urine via intermittent catheter.
18:15 - eat
19:00 - turn onto left side.
20:00 - turn onto right side.
back to the top.

I sit most of the time by his bedside making sure he isn't getting into too much pain and therefore a potential autonomic dysreflexia attack. Give him his oral medication as necessary. Make sure no one messes with his bad left knee. Move him when he is in pain, having leg spasms. On bowel days empty his bowels manually. Many days I cook for him as the food is so bad here.

So there it is...

Saturday, 18 August 2012

Surgery Day

08:00 in the morning yesterday, Friday 17th August, the Anaesthetist arrived to take a very detailed medical history. So Hubby asks me to do the talking as he gets a bit wary of repeating his story of all the operations since 2007, his allergies and particular on going medical difficulties. Nearer to 09:00 the plastic surgeon sent his under study in with the consent forms to sign, while he stayed in the office next door. Odd to say the least, OH not impressed.
Just after 09:00  the porters came to take Hubby to theatre. Before he goes we label his left knee as "fragile" to remind the team to take care so his knee does not blow up with swelling.

While he is in theatre, I go do some laundry  and talk briefly with the accommodation manager to obtain a room key just in case I cant manage to  continue looking after Hubby during the night due to his new bed turning regime. Currently live off 5 hours sleep a night, anything less may become too detrimental to my health. 

11:30 meet Hubby back in recovery. He is pale, groggy but awake and surprisingly quite "compos mentis". He has two drains attached to his back wound. syphoning off the blood into two sport drink sized bottles.  They have also given him a huge 1 litre bag of IV Hartman fluid, which worries me some what knowing how his one kidney will eventually over the coming while react to that, over producing urine. So to be on the safe side I give him a catheter to drain off any excess. No reaction yet, only a normal amount. Can be potentially serious not to manage as can result in an Autonomic Dysreflexia attack. Whilst in recovery we see one of the other surgeons giving some feedback to his patient re the success of the operation, Hubby is slightly irked that he is given none.

12:10 we arrive back on the ward. Negotiate straight away re removal of the oxygen, the extra fluids and the 'flotron' boots which are by now causing painful spasms in his leg. We discuss with sister the care regime regarding turning as Hubby has to avoid laying on his back . We try putting him on his left side and he finds it extremely painful , so the plan is amended to 4 hours on right side alternated with an hour on left side. He also negotiates a special position for eating as he cant eat when laid down, his muscles having been weakened by his spinal cord injury means he has to have some of the gravity of sitting up to eat his food. By this time lunch is on the ward, fish and chips. It was horrible, re heated battered fish and the chips well Hubby took a bite and spat it straight out as it exploded in his mouth, being too powdery and dry. I make a dash to the hospital canteen and pay for some fresher looking fare which he managed to eat. They take your benefits away from you because you are supposed to be fed and watered in hospital, what a joke.

15:00 I decide to do another catheter, thank goodness I did, I was right, his kidney has kicked in,  huge amount of urine collected and again at 18:00, 23:30 , you know that physics law of gravity what goes up must come down, well here's a new one 

what goes in must come out....

Saturday, 11 August 2012

The system is taking the p*ss out of carers

My Hubby was admitted to hospital on 20th June with a wound on his thoracic spine that requires surgery, two lots in fact . the first was performed weeks back to de-bride his wound to aid in healing. Since which time he has been attached to a vacuum pump and is having two strong IV antibiotics which require careful blood monitoring for liver / kidney function. Next Friday he will have the final operation to put skin graphs over the wound.

So why am I still needed to help him.

  1. He has a has a fear of hospitals since his appalling, cruel, treatment at a "nameless" NHS hospital when he first got ill in 2007. He can become verbally combative if he feels threatened, or unsafe. My presence ensures that he does not get labelled as a nuisance patient, as I keep him calm, he can have a row with me and it does not cause the whole ward to get upset.
  2. Medical Safety : when he has an autonomic dysreflexia attack he is unable to press the call buzzer. Also since that buzzer is understood by most of the staff to mean that a patient wants them when they can get round to it, because it is not the emergency call alarm, the staff could loose a vital 15minutes in a syndrome that gets very serious, very quickly, added to which getting the on call Doctor on the ward quickly is a bit of a lottery. This actually happened, previous post details.
  3. Patient Dignity :  who would want strangers how ever qualified, sticking their fingers up your bum so that you can empty your bowels, sticking a pipe down your prick so that you can urinate. Rubbing cream on your intimate parts.
  4. Feeding : although he can if the right preparation is made feed himself, (using 2 functioning right fingers + thumb) he still needs a lot of help as he cant reach for things, his finger dexterity is very poor so lifting off plate lids, buttering bread, opening pepper packets etc is near impossible. if I wasn't there by  the time staff helpers would find the time, he would be eating cold food, be rushed and someone would be bound to forget to make sure his drinks bottle was refilled and near by. Also I am cooking for him many times a week because the hospital food is so bad.
  5. Multifaceted problems : it is very difficult for the different numerous staff members to keep in mind amongst all of the patients on the ward , the various pre existing medical problems they have as well as what they are in hospital for. Terence has a high level spinal injury, a very painful arthritic left knee, one functioning kidney all of which have to be born in mind when interacting with him. So again I am an extra safety measure to ensure someone doesn't do something inappropriate with all good intentions.
So I am here at his side for most hours in the day. I have carefully managed a few short break escapes where I have ensured he probably wont need anything, timing being everything. I try and survive on 5 hours sleep if I'm lucky, sleeping beside his bed on a mattress on the floor, just in case he needs help during the night. The window of opportunity for sleep being slotted in between urine catheters at midnight and 06am. 

So imagine my disgust to look at my bank account yesterday and find out that my carers allowance has not been paid since 16th July. Even though I spoke to them told them I was still caring full time and was not available for work under the regulations. May be the stupid idiots have sent a letter to my home 2 hours away that I have not visited since his admittance. 

So what are people in my position supposed to live of, I'm supposed to be a kept women living off hubby meagre state pension. I do not qualify as being available for work as I am not, obviously. Besides who is going to employ a Masters degree qualified person in the type of work that would be available for a handful of weeks any way. They would turn me down as being over qualified.  I do want to go back to work, but meaningful work as befits all of the work  I carried out and experience previous to our family tragedy , also it would require my local PCT stepping up to their responsibilities and actually providing the carers that my hubby is entitled to under the continuous health care regulations.

The welfare state is supposed to be a safety net , so where is mine ? 

Wednesday, 4 July 2012

There's Patches & There's Patches


pretty uneventful, starting to get into a routine, up at 6am do his catheter, lie down for another 20mins, up roll up bedding, put mattress into vacuum pack bag roll out the air. Get a wash or shower, ready for another day. Saturday got out to ASDA in the afternoon, bought a really cheap DVD player as the ones on the provided TV's are not working and some food for myself for the week.

Monday 2nd July

Lots to do on this day. Try to co-ordinate everything with the busy nursing team, we manage it, sort of, but a bit manic. 2 lots of IV antibiotics, bowel emptying, vacuum dressing change, sounds easy when you say it quick. Every item takes time and can not be done at the same time. The Etrapenem Antibiotic takes 1/2 hour, the [x-]mycin one takes nearly an hour, bowels 2 hours, vac dressing 1/2 hour, then there's lunch and dinner, as you can see the whole afternoon is shot. Well we get Hubby settled after all that poor dude is knackered. Then just before 6pm the drug run, brought us a bit of a laugh. They tried to prescribe Nicotine Patches instead of his pain patches. Very funny since Hubby has never smoked and was a keen sportsman before his illness. We could have been upset by this but you have to keep a sense of humour about these things.


Got up as usual. Get Hubby his breakfast, look out of the window and see a beautiful little beasty.
A little dear, thought it was a goat at first but no it really is an urban dear. Yesterday was quite busy, doctors rounds and met up with Hubby's OT again. Hoping to mobilise him in a wheelchair with pump attached. Any way we will see. Have a bit of do with cleaner he has a thick heavy cold, coughing and sneezing and then wondered why I didn't want him anywhere near Hubby.

Tuesday, 26 June 2012

Emergency Fetch the Doctor - Autonomic Dysreflexia

Yesterday, Monday we were expecting a quieter day following a fairly full day on Sunday. All went well until half an hour after Hubby was given a new type of antibiotic, all hell broke out.

I'm sat there having an afternoon doze and all of a sudden Hubby goes into a massive upper body set of spasms, shouts out in pain. They were so bad he thought he had damaged his left arm. I knew it was serious so get the nursing staff involved, who try and take his blood pressure but cant because of the spasms in his arms and chest. They end up attaching the cuff to his leg to get a reading. 

Oh shit it was up to 250/90 Autonomic Dysreflexia was surely indicated, a medical emergency. Doctors were called. We have the GTN spray but decide to hold off using as it can cause as many problems as it solves, diving blood pressure onto the floor. Myself and the nursing staff go through the procedure of making sure there isn't another pain source that is the reason for the attack, I empty his bladder just in case. Always seems like an age when you are waiting for someone to come that can do something positive. Hubby's throat was beginning  to close up, pains in his chest, his head felt like it would explode, feeling nauseated, frightened, shouting out every time a wave of spasms hit. 

Eventually the Doctors arrive, give him something for the pain, some anti histamine, oxygen, paracetamol drip. After about an hour his blood pressure comes back down to more normal levels and the more serious possibilities of bad outcomes lessen. Stroke, Cardiac Arrest etc.  They take some arterial blood  from his groin, it is quite difficult to locate and take. 

Diagnosis:  Anaphylaxic shock from taking the anti-biotic which brought on Autonomic Dysreflexia. 

He is okay now as I write although totally wiped out by the bad experience. The staff on the whole were great, I think it was a bit of a wake up call though, as it re-enforced the importance of not leaving Hubby on his own, and justified me being here. He might not have been able to push the call button had he been on his own. 

Well done RNOH staff. 

Monday, 25 June 2012

Hubby , On Another Long Recovery Road.

We received a phone call in the early evening on Monday 18th from RNOH that a bed had been secured for Hubby, could we make our way on Tuesday. Well actually no as Hubby needs an ambulance + paramedic, so we made our way on Wednesday instead, Hubby in the ambulance me following in our car with a months worth of clothes and supplies. Ambulance crew were Hubby reports really nice guys.

I of course had problems finding some where to park on arrival so Hubby was already in his room by the time I arrived. Apparently I missed one of the usually very good helper staff being very rough with him, need to keep her away from him for the duration. The Ambulance driver even noticed and told him quietly as he left to not take that kind of crap. Spinal patients can end up being roughly handled when positioning them in bed, by the time you have log rolled them several times, used a sliding sheet etc it can be quite wearing and painful. I think it happened this time because the helper had not read my briefing sheet before coming into contact with her patient, I have asked the staff to be very careful when touching Hubby because of his elevated pain levels. No sudden grabbing of limbs without warning etc. I am trying to avoid nasty verbal exchanges, as Hubby will tell them in no uncertain terms if they do hurt him. Treat him nice and he will be the most affable guy ever met, fall out with him, well lets not go there.

Hubby was the last patient on the surgical list, so it was very late when he finally got wheeled into theatre. During surgery they cut away the necrotic tissue, cleaned up the wound, took bone and tissue samples. They also attached a vacuum pump to the wound to drain off the blood and crap etc After such a long day Hubby was a bit grumpy afterwards and apparently having words with the theatre staff afterwards, as he was so cold and they would not listen to him about the Flowtrons they wanted to use on him, it had been agreed pre op that he could forego their use due to his spasms in his legs and especially his left knee. If you want to wind him up treat him like a stereotyped geriatric that doesn't know his own mind.

In the days since Hubby has met his plastic surgeon who will come into play later in his treatment plan. The spinal surgeon made an appearance to say things had gone okay.

We also met one of the dieticians, who basically said hubby needs to eat well to keep his protein , zinc, vitamin etc levels in his blood at good levels  to help with the healing process. This sounds good but have you eaten hospital food lately. They provide meals like the home delivered ones Ronnie Corbett, comedian advertises. Everything is microwaved into an inch of its life. So I will try and get out and fetch some extra food, which I need as well as even though I am here full time with hubby they do not feed people's carers our particular hostess is very huffy about me even pinching a mouthful Hubby's left overs.  They have choice on the menu but no where near enough for long term stayers. I would find the menu easier to cope with as I like food with some spice in it, but hubby hates sauces except gravy , only eats pasta and rice occasionally, so that further limits his choices. The menu has also missed a few staples of British diet , spaghetti bolognese being one.

Getting food on the hospital site is a bit problematic, the main EAT restaurant is not open 24 /7 and was closed when advertised as open Wednesday evening when I went to check it out. Last time I went there the food wasn't up to much.Can recommend the bacon sandwiches cooked by the volunteers in the WRVS. Basil's Cafe,  in the Aspire complex has very good atmosphere and food, although a bit pricey.

The ward is very noisy most of the time so Hubby is having problems getting enough sleep / rest. The front ward door continually bangs. He also has a pump running draining fluid from his wound and the special alternating air mattress which is also very noisy. So we have swapped one lot of intrusive door banging at home for another lot. I am  sleeping on the floor on a couple of memory foam mattress toppers which get taken up at every morning at 6am and vacuum packed in a bag to save space. Trying to persuade one of the local hotels to give me a special rate so that I can leave Hubby on nights at least, sleep in a real bed and get a shower. At the moment the sink washes are becoming more than a little tedious. Mind you solidarity with my poor Hubby as I guess lord only knows when he will get a shower again, I have been bed bathing him and have bought him some of those waterless shampoo shower caps so that his hair does not become so greasy you could fry chips with it. 

This week should be pretty calm, although on Friday he will be put under anaesthetic again to fit a long line in for his antibiotics. Better than hand based cannula which  tend to get in the way of his already under functioning hands. 

We are lucky in the fact that this ward is supplied with TV/DVD players that were supplied by the Buttercup walk charity, but over time the remote controls have been taken by the little people. I am surprised this has not been addressed as it is a form of disability discrimination leaving this group of patients at the mercy of the over worked under resourced staff to change channels etc.     

onwards and upwards...

Saturday, 16 June 2012

Progress & Recognition

We left the house at 11am in an ambulance with our just in case paramedic on board. Hubby laid on his back positioned on a piece Roho cushioning to try and save his pressure sore from getting even worse. There he laid for the 1 1/2 journey feeling the pain cursing through his body with every bump and lump in the roads. His swollen feet on fire with the neuropathic pain.

We phoned the Outpatient Assessment Centre Bolsover Street, Central London, when we were about 15 minutes away and to their credit, porters were waiting for us to take us up to the first floor appointment. No sooner had we arrived and they decided to send Hubby for some more x-rays, which we found rather odd since in the preceding weeks, both MRI / CT scans had already been taken. Oh, a different angle is required with Hubby sitting up to show how his spine looks under the pressure of gravity. Okay we said, not sure how we will accomplish that for you as Hubby can not sit up unaided. Anyway we managed it, sort of, with me and the radiology nurse helping to prop him up. I love how these consultants order these tests and do not have a clue how difficult it is for the patient to actually do it.

We eventually got to see the consultant after a further wait. By this time the wound blood was starting to seep through the dressing, so I guess he got to see it at its worse. He did not seem to deliberate for long before announcing to his colleagues, that a bed needs to be found urgently for his patient. They will try and get him in early next week, or as soon as a bed becomes available. He told Hubby that he hoped he realised that it will be a prolonged hospital stay, we said what about a month , he said no maybe longer. He mentioned something about Hubby's Baclofen pump being a possible extra source of infection, that was something new to us which we will have to research what he meant.

We thought we were finished so asked the ambulance crew up, but no apparently they wanted to do  pre-admission procedures to apparently save time next week during his admission. Hubby by this time is getting very grumpy, having not being able eat, being in pain etc etc. The poor Doctor taking the bloods & details got the brunt of Hubby's displeasure, which I hope he does not take personally.

We eventually set off for home at about  5.30pm. On the way back the driver got a bit lost and we ended up on the M1 rather than A1 so Hubby had to endure an even more bumpy cross country trip. At one point I thought we were in medical trouble with Hubby as he went as pale as a white sheet, his face contorted in pain. How he managed to keep it together I do not know, as even myself able bodied as I am was in pain, feeling sick etc. We arrived back home just after 7. 8 hours since leaving home in the morning.

Can someone tell me how this is conducive to good patient care, well being. It is about time specialist units like this made use of information technology , doing consultations in conjunction with local doctors via video phones.

So now we wait for the available bed at RNOH Stanmore and another torturous journey to hospital. At least we have a few days to get everything ready.

Overall a successful but painful visit .....

Sunday, 10 June 2012

The Inequalities of Life in the UK, Medical Apartheid.

Hubby is getting his 7cm x 7cm thoracic, spinal deep, grade 4 wound, dressed every day by the local nurses, who keep telling us he should be in hospital, because of the amount of bleeding, swelling . Do the Doctors not have a duty to listen to their concerns ?

It was with some irony, that I watched the news of a certain high profile elderly gentleman being hospitalised with an UTI. Most of us plebs would be thrown a bottle of antibiotics and be told to get on with it. Having said that  I am glad someone in this inequitable country is getting the medical treatment needed to stay healthy, and wish him long life and health, as I would any fellow human being.

So its been 4 months 4 days since Hubby sustained an injury to his back whilst on holiday. The wound is not progressing in a timely manner from the initial, Inflammation Stage è Proliferative èMaturation . Most documents I have read say that stages 1&2 should last no more than 2 months, where as the last stage can take months - years. While he still has the necrotic tissue in place his wound stands no chance of healing over and is a ticking time bomb for possible infection, and further destabilisation of his spine. Only reason he has not got systemically sick already is the broad spectrum antibiotics he is taking. 

There will be no surprise to many readers of this piece, that there is Medical Apartheid in the UK. If you have money you get treated straight away, if not they leave you as long as they think they can get away with , gambling  that you don't get too sick to treat, kind of hoping that you die so problem goes away, or fire fight as you have to go into hospital under emergency rather than urgent conditions. Do not let anyone fool you , your hospital admission unless you are in A&E and at deaths door today, is based firstly on how many spare beds, surgeon schedules, not on whether you have an urgent clinical need to be medically sorted. 

As I said its a gamble taken by the admissions people who do not always know how ill you are, what effects the delay will have on your long term life expectancy or quality of life. One might cynically  ask , and do they care? probably not. There will be no personal accountability for the decisions that they make. 

Make a complaint , be prepared to receive a letter that bears no relation to the reality that you went through, no proper investigation, no root cause analysis, just trite politicking. Remember the NHS is not a learning organisation, in the management organisation meaning of the word , it repeats and repeats the same mistakes over and over again. One life lost or ruined is one too many in my book.

So all I can ask is please do not play Russian Roulette with my Hubby's life, I like having him around. One family funeral is enough this year for anyone. 

Monday, 4 June 2012

What could I do if we won the Euro-millions

I got to thinking what good could I do if we were the lucky winners of the enormous Euro-millions jackpot.

There is a empty plot of land opposite us, I would love to have 5 state of the art accessible bungalows built on it. I would build a little community, with a ramp accessible warm therapy pool , that the local community could use as well. Staff up the place with physiotherapists, senior experienced nurses to run the place and well paid / trained carers to help the people living there.

The spacious 2 bedroom, bungalows would be open plan so that wheelchairs have easy access everywhere. for example , ceiling hoist tracks built in. Electronic sliding front doors. Use the latest technology in Eco friendly heating and recycling of water. Make use of technology to aid those living there with their independence. The site would also have office / shower  facilities for the support staff. The gardens with shade, would be accessible, with sensory elements, raised beds etc.

if we got the business template right we would then open other sites around the country in areas where the council is failing to meet the needs of the local disabled community. I would also use the project to indulge my passions in developing business talent as I would encourage the physiotherapists to develop themselves into business units using the provided facilities to provide services to the wider community, in the spare under utilised slots for the bungalow community residents.

I would also like to fund research into new electric wheelchair battery technology, to make them last longer, maybe by some sort of recycling energy technology, plus make the batteries physically lighter and smaller. Why can't the disabled have chairs more akin to Professor Xavier's wheelchair from the X-Men.

On a personal front we would of course get Hubby the best treatment available , hire well paid / trained personal staff to help him. Buy the equipment that would make his life a lot easier, place to live, car, specially adapted electric wheelchair etc.

But at the moment no amount of money in the world would probably  be able to make him be able to walk again. 

Final thought for today : Money can do a lot of things but can not make the impossible, possible.

Saturday, 2 June 2012

#NHS Thriller-Farce Update

Right, deep breath, so many things going on at the moment, or should I say not progressing as they should be, involving Hubby’s care,

MRI Scan Results

Results letter says “oedema-like marrow signal in tip of T10/11/12 spinous process with possible destruction. Likely Osteomyelitis”  does not sound good does it !

Baclofen Pump Refil.

Hubby travelled all the way to Addenbrooke's on Wednesday, despite having grade 4 pressure sore. We are lobbying for this in future to be done at consultants Peterborough clinic. We will fight them on the beaches, we will fight them ...

CT Scan.

After two abortive attempts, no ambulance supplied, got Hubby’s scan done on Thursday. Scanning unit at Peterborough were very supportive, used some initiative , did a scan of his whole thoracic spine plus upper lumbar to make sure surgeon has full picture including the new hump that has appeared on Hubby’s back. They also did a dye contrast scan . So hopefully RNOH surgeon has all the info he needs to make a speedy assessment. We now await the results. He will send for Hubby for an out patient appointment first, so another long ambulance trip for a 10 minute consultation, not happy about that. Why don’t they do stuff like that using video calls. I know they like to see / feel the patient but in this case there is more danger to Hubby travelling all that way than the value the consultant will get out of the consultation. Unless they will admit straight away.


Hubby in varying levels of pain, keeps complaining of different kinds of pain in different locations. Eg keeps getting sharp pains in his head, occasional stomach pain. His arms and shoulders are a worry, he is really concerned that he going to lose the little function he has. Neuropathic pain in his feet is bad at the moment as well. Been waking me up during the night because he keeps getting painful spasms in his right leg.


No word what so ever from the dude at the PCT in charge of getting us care provision.  I have been told he is breaking the law not getting it sorted as Hubby comes under Continuing Health Care . NHS is therefore liable to provide his carers. Meanwhile I am coming under pressure to put Hubby in a nursing home because of my own health problems with my back. I find this an incredibly stupid suggestion on lots of levels, nursing homes are not keen on taking patient on that should be in hospital, Hubby needs a specialist unit for the severely physically disabled, but I know they will try and bundle him into a dementia unit which is totally unsuitable as he is as fully mentally aware. We are going to use some of our savings to get me checked out, MOT, when I get him in hospital, will rule out any serious causes of the pain in my back and hips. I am not happy living on pain killers long term not knowing what is up. Probably a trapped nerve though.

Next Moves

Firstly get through this long weekend. After which continue to lobby GP’s &  surgeon to get Hubby into the spinal unit asap. Battle to get hubby his carers  afterwards, 1 battle at a time. 

Wednesday, 30 May 2012

The Ongoing #NHS Treatment - A Modern Thriller-Farce Worthy of Hitchcock

If it wasn't so serious it would make a good plot for a Disaster Movie or a thrilling episode of Holby City.


Hubby has a now confirmed level 4 pressure sore wound on his thoracic spine. We travelled in an ambulance all the way to Stanmore on May 4th. [1 1/2 hours each way ] to get a MRI scan on Hubby's back, due to the local services not being able to co ordinate the making available of the Baclofen Pump hand held computer to be available , should the magnetic interference of the MRI send the implant in Hubbys body into a fault setting. The guys at Addenbrookes will not let Peterborough play with their toys, even though they come under the same authority. Sod what is best for the patient, lets play politics. Anyway MRI shows the wound is at bone level so it is a confirmed level 4 + wound.

During the following two weeks awaiting for a telephone call from Hubby's consultant at Stanmore  re the results, Hubby develops a large [ 25cm horizontal length x 15cm high/wide x 8cm deep ] mass / swelling above the wound. looks like he has developed a large hump on his back. So I make a rather worried call to the local GP, who to his credit makes a home visit on 18th May, sends us to the local hospital for an x-ray to rule out further damage to Hubby's spine. Well this is where it gets really farcical , we have to have an ambulance with a travelling paramedic because of Hubby's condition and being at risk of developing Autonomic Dysreflexia. The local managers in their infinite wisdom have told the crews that everyone who has this type of ambulance must pass through A&E first for them to do an internal referral. So we do get our x-ray but end up staying at the hospital 8 hours door to door for something that should have only taken 3 tops. REMEMBER HUBBY HAS A GRADE 4 PRESSURE WOUND not a good thing for him to be immobilised that long, no food or drink offered until it was nearly time to get into the ambulance to go home. So I had a terrible time when we got home , trying to calm him down as he was so upset with the way he had been treated, he was in unbelievable pain and I had to deal with a near AD attack. Good news though no further breaking of bones but still he is left with an undiagnosed problem on his back.

The Following Week:

We finally get a telephone consultation with the Stanmore Consultant, giving us the name of the spinal surgeon and the bad news that Hubby's case is not thought to be an urgent priority, they have no beds therefore he is going to have to wait at least another two months or until he becomes so ill that his life will be at risk. So if we have had the money and been able to have treatment in the USA whilst still on holiday we would have been treated straight away as they deemed it so serious, but in the UK it is okay to have an open large wound on your back for six plus months.  I am getting rather frantic now and have asked the local GP's for help, as I am struggling to cope physically with all of this as I have a very painful undiagnosed trapped nerve in my lower back. [ My assumption as to what is wrong] . Then we get the old chestnut well put him in a nursing home, sounds easy does it not. From what I have read there is a national shortage of specialist spinal injury nursing homes and they are not keen on taking on someone with a medical problem for which they would usually send that person to a hospital with.

Why Do I think he should be admitted now / immediately:

  1. Skin seems to be starting to become reactive to prolonged use of anti biotic, red blotches on face, skin burning like reaction underneath pain patches.
  2. Skin redness / erythema under dressing edges.
  3. Malodor coming from wound.
  4. Wound is now bleeding [where is blood coming from ?] and becoming concave.
  5.   MRI scan shows wound is at bone depth.
  6.  Wound not responding to dressing treatments, necrotic tissue still in place.
  7. Time : initial wound sustained on February 6th – no further on with the healing process nearly 4 months later.
  8. No trained carers / nurses at home except for wife, and short dressing change visits from district nursing team, to attend to extra nursing care needed at this time, extra pressure relieving movement needed.
  9. Periodic episodes of :- shakes like chills, sharp pains in head, blurred vision, increase in neck spasm, stomach cramps, tightness in chest area – not sure whether purely SCI related or pressure sore related, seems to have become worse lately.
  10. Perceived extra loss of function / strength in arms and hands especially left side.
  11.  Very lethargic and depressed . Can not seem to get any significant / beneficial periods of sleep.
  12.  Has started to take small amounts of Diazepam again to just get through the day. [average 3mg / per day]
  13. Pain levels have increased from background everyday pain that he lives with as part of SCI.
  14.  Although persevering with the use of the alternating pressure bed, it causes him pain as it inflates / deflates under his back, and vibration sets off painful spasms in his legs. Extremely difficult to use the usual measures of side lying, as the pain in his shoulders becomes unbearable and his lack of full strength arm / hand function makes it very difficult for him to get himself a drink or do anything in bed for himself. So adding to point 11.

The Farce of this Week.

The Surgeon wants Hubby to have a CT scan locally to get more pictures of the bones at the wound site. So with the GP & the local Disability Advisor we organise the transport, remember Ambulance with a paramedic on board for safety. This was booked under the 2 hour urgent ambulance as there is no provision in the hospital transport procedures for this type of transport, you have two choices a transport ambulance crewed by first aider+ trained staff or the full monty an emergency ambulance crew. They didn't turn up, we tried again yesterday, they didn't turn up. They have no idea what this does to someone who is already very ill. He has to wear clothes that he wouldn't have to at home, all of which add to his pain levels. I have to get him dressed, even with log rolling that is painful for both him and me. Then he waits slowly getting more and more stressed about what is going to happen.  IT IS UNBELIEVABLY CRUEL.
We will try again on Thursday, the Disability Advisor has tried to explain the situation to the East of England Ambulance Service, lets hope they find some compassion. Today we have to make the trip to Addenbrookes in a private ambulance to get Hubby's Baclofen pump refilled, an hour each way in an ambulance with A GRADE 4 PRESSURE SORE. We tried to get the procedure moved to Peterborough but again no you cant play with our toys.


Monday, 14 May 2012

Dads Funeral Week

Well this week on Thursday Dad's body will be taken back to his beloved Somerset from where his half of my family hale. All of his immediate family will be there, to say their fond farewells, with one notable exception ME.  Hubby is too sick to travel all that way, no one appropriate has offered to take care of him so that I can go. I have done what I can to help with the arrangements from my living room incarceration.  No word as yet regarding a hospital admission to get Hubby's pressure sore sorted, should get some feedback soon I guess.

Our GP very kindly visited me at home re my bad back, which is still killing me by the way. Apparently they don't do x-ray checks on bad backs, you are supposed to live with it and get addicted to lots of painkillers instead. Not what she actually said by the way, she wouldn't of course , but the result nether-the-less. Something is definitely wrong with my back and I want to know what I am dealing with. So we will use some of our hard saved put a side money and pay for a private scan  as soon as I can arrange for someone to look after  Hubby so that I can take care of myself for a change.

Still no word from the local PCT regarding carer provision for Hubby. That's 10 months now that I have been struggling on solo. I think I am going to have to make an official complaint, as they have a duty of care for Hubby that they are not taking care of. Expecting the complaint to be a total waste of time, but luckily for them I do not have the energy any more to make them look like complete [substitute rude word of choice] by going public in the media re their illegal failures.

Hubby is really struggling at the moment with the pain, stomach spasms, he had a nose bleed this morning which I hope is not an indication that something else is now going on. He is still sat in a wheelchair that makes his pressure sore worse,  new one on the way but still 5 weeks away. Having problems with his alternating pressure mattress  as it sets off painful leg and stomach spasms. So life continues to be very difficult for both of us.

We had an unwelcome diversion yesterday, one of the twitter users that I follow, is in Addenbrookes hospital having a very serious colon operation. She awoke from her op to find out that someone had given her a drug that she is known to be allergic to, she was wearing a wrist band at the time saying so as well. She was shouting from her account for help. Anyway her loyal followers went into action,situation was sorted by two of them making sure the operations matron got involved. Unfortunately another case of medical staff not listening to their expert patient, she has had Crohns disease for over 15 years and knows what works for her and what does not. Stories coming out of the NHS at the moment are very scary to us that have to use the service on a regular basis.

Sunday, 6 May 2012

MAY: Dark, Soggy and Wet a bit like life really.

Took Hubby to RNOH Stanmore on Friday. Private high needs ambulance crew were great, took the time to politely listen to my pre briefing and this then meant things went pretty smoothly. He had an MRI scan on his back and then a consultation with his consultant. Bloods were taken to try and determine why he is getting fever like shivers and increases in spasm activity. Find out results next week some time.

Got word today that Dad, is very poorly and not expected to with us for very much longer, 1-2 weeks estimated. Still no ad hoc carers provided so that I can visit, that the health care system in the UK today, no one gives a shit.

My Health:
I am bit concerned about my own health as for the last 4 days my lower back has been killing me. Going to try and get the GP to send me for an x-ray to rule out anything serious. Very painful for me moving Hubby about.

Dept. of Health asking for feedback again:

There is a group at the DoH that is looking at the future (2014+) of giving people who qualify for continuing NHS provided health care a personal budget. Obviously pros and cons to this. I can only say what we have at present, is not working for us, this is what I put to them , 

Dear Team,

While I am not in your target audience to read this discussion paper on the possible future of personal health budgets to those who qualify for continuing health care provision. I am the wife and main carer for a spinally injured man who qualified for continuing health care in Oct 2009 to be provided in his own home. Our story can be read at summary in Oct ’11 entry.

The system as it stands is not working for us.

1.      My first problem with the system is that all the patients go through a rigorous screening program to ensure that their need is on-going nursing / medical care, but then the system, provides them with minimally trained carers on or near the minimum wage.
2.      That the person at the PCT in charge of ensuring that the care is provided has no incentive to ensure that the care provided is appropriate, adequate, or timely. Instead the incentive for career progression is getting the cheapest option that they can get away with.
3.      Since qualifying for NHS provided care my husband has received sporadic care provision from care agencies more concerned about their profits rather than providing appropriately qualified staff.    
4.      Our most recent gap in coverage , no carers provided since July 2011, new agency named in November 2011, by Feb had come up with only 2 possible male candidates, one lived over 50 miles away the other got another job by the time they moved to secure tenure. Meanwhile I have been left with absolutely no support to care for my husband and now since November I have been begging for some respite care so that I can visit my dying father (1-2 weeks left to live now).
5.      I have been unable to work since 2009 because of the failure of the current system, I have lost over £150k in lost earnings, not to mention lost opportunities to enhance my career.

So I write this to you , to remind all that there are real people out there needing some real positive changes to the system as it is not working at the present.