RNOH: Surgery full marks , Transport 1 out of 10

17th January after a protracted 3 year wait, Hubby has at last got a slot to replace his worn out left knee. We had his first attempt to get this operation done cancelled at the last minute back in 2010, due to the local hospital deciding that they could not deal with Hubby's other disabilities. The decision was of course taken after sitting on the waiting list for nearly a year all told.

So after much debate as to the benefits of carrying out such a procedure in some one who can not and is not likely to walk, it was decided to carry out the procedure for the alleviation of pain and to get Hubby putting some weight through his legs again as he was able to do when he was first sick. Being able to stand using a standing frame or tilt table is extremely beneficial for some one with a spinal injury as it helps with the processing of bodily functions.

RNOH Stanmore as usual with some negotiation, reluctantly recognise that Hubby needs someone with him to look after his pre existing problems. So they manage to source us a side room rather than a bed in an open bed ward. Our journey there was great as our local GP's made sure we had the appropriate type of ambulance with a technically qualified crew, minimum grade EMT. The usual first aid plus trained transport crew being of little use to me if we have an emergency Autonomic Dysreflexia attack to deal with.

When we arrive we find out we have been assigned to the Duke of Gloucester ward, which is very near to the EAT Restaurant but accessed by a linked walkway that is open to all the elements.The room is pleasant enough , has a TV, sink and room for wheelchair plus bags, and blow up mattress for me. I check with the staff as to how they want me to work with them. They don't want me emptying stuff in the sluice, so they will do all the urine bottle rinse outs for me, with me filling in a form re the amounts colour etc for them to officially record. Can understand this different requirement as the walk to the room would involve walking across the open ward which the other male patients might find disconcerting. They very kindly agree that I can use the staff room toilet which will save me walking back into the main hospital down those unsheltered walkways in the dead of night.  We are met at the ward by a friendly face for me, Jackie the ward sister was at some of the  Hospital rebuild project meetings I had previously attended.

Having passed to the staff the detailed care plan that I have developed for Hubby, just in case I am ever incapacitated , I receive quite a few compliments regarding its contents. Very gratifying to receive such from professionally medically qualified people, I must have learnt something I guess.

Hubby's Spinal Injury Consultant visits very soon after our arrival to see whether Hubby wants his Baclofen pump adjusting to deliver more medication while he goes through the procedure which might set off his very bad spasms. Hubby decides to try and manage as turning up the dose can affect his breathing and arm function.

Friday, Hubby leaves the ward  at about 10am to go for his knee replacement op. It is freezing cold outside and he is wheeled along unsheltered walk ways back into the building that holds the theatres. About 1:30 pm I get the call that I am needed in recovery as Hubby is giving the staff hell. Apparently he feels they are moving his body about like he is a piece of meat rather than asking first. He is also I find out desperate for a urine catheter which might be the actual source of his irritation, and verbally combative behaviour. I sort this and we get him back on the ward as soon as possible. The operation went really well and nearly straight away I am  able to move his knee, which is an absolute god send as he hates having his catheter done when lying down, preferring to sit over the edge of the bed which to do I have to bend his knees to swing him into the up right position.

Saturday and Sunday we meet the weekend on call physiotherapist but Hubby is not feeling well enough for her to get stuck into some passive exercises yet. We explain it is not such a problem anyway as he is bending his new knee on a regular basis anyway because of the way I have to look after him. Monday we meet the ward physiotherapist briefly, talk to him about Hubby's position and disabilities but no actual physiotherapy is carried out by him.  Same on Tuesday and Wednesday , we are not surprised as we have come across many  that if you mention spinal injury they will do anything except actually work hands on with the patient. If I had anything to do with this type of operation again and that it involved a Spinal injury patient I would recommend that the rehab be carried out by specialist spinal physio would are not afraid of what Spinal injury means but have enough joint mobilisation knowledge to give rehab on a joint replacement. Not such a loss in this case for us though as I carry out a lot of passive movement with him as part of our daily routines, we just feel a bit short changed that's all not being treated the same as the able bodied patients on the ward.

Hubby recovered pretty well , although because of the terrible food at RNOH I did start to become a bit concerned that he was surviving on baked potatoes and apple crumble as he could not stomach anything else on the menu. He had become dehydrated as his urine colour and amount told me so. We were therefore pleased to be told he could go home on Wednesday afternoon. We explain to the nurses that he needs an ambulance that could take him in his wheelchair but need a crew with at least one member that is EMT qualified , just in case of emergency and with the weather being so bad. So the nurse orders a technical ambulance for our journey home.

On the Wednesday we had to get Hubby's Baclofen pump refilled then after that we were free to head home. We got organised making sure we were all packed and ready . We let transport know that we are ready just in case our allotted crew is also ready a bit earlier than we had ordered.

From here on things went awry ...

feedback from the transport office was not accurate and led us to believe the type of crew requested was not being made available. Therefore trying to be helpful I say we will risk it with and ordinary crew as long as the crew are happy taking the risk especially in light of the weather closing in. Time was getting on, people were dithering , Hubby by 2pm had , enough and pulls the plug, which causes knock on problems because of the high demand on beds at this time. The Out Patient Manager whose department transport comes under, comes to apologise to Hubby, but he by this time is in no mood to listen. Apparently we were allocated the type of ambulance we had requested but it got delayed due to the weather , not the info conveyed to us. I had a quiet word with him on the side, telling him I was not impressed with his departments communication skills or management in a crisis situation i.e. the weather. I was thinking back on what we used to do in my traffic control days, where keeping the customer updated was paramount or else the power stations would not have had enough coal to burn.

The next morning the manager must have taken the decision that since we were willing to risk travel without an EMT the day before it was totally okay to provide a small mobility type van to transport us home. As soon as it showed up I knew it would be too small to fit electric wheelchair + special mattress + luggage and also have room for me to look after Hubby. Another hour delay , so we negotiate putting Hubby back on a bed for a while while we wait for a more suitable vehicle. Eventually a mini bus type vehicle turns up with just a driver, no EMT , but we need to get Hubby home so we risk it.

Thankfully it was an uneventful journey and we did not need to divert to the nearest A&E. Very annoying that in a hospital that deals with people that suffer from the potentially life threatening Autonomic Dysreflexia every day the transport department do not treat the potential risks in a sensible way.

RNOH Feedback scores :

Surgery 10/10 - Nursing 9/10 - Rehab 4/10 -Accommodation 3/10 - Food 1/10- Transport 1/10

Human Rights & #Caring

The British Institute of Human Rights  in association with N:Compass funded by Equality & Human Rights Commission has produced a leaflet on the Human Rights of Carers and those they care for :-  http://bihr.org.uk/sites/default/files/BIHR%20Pocket%20Guide%20for%20Carers.pdf

Having read it I realised that both my Hubby's and My rights had been trampled on time and time again since he had become sick in 2007.

Lets start with Article 8 : Right to respect for private and family life home and correspondence.

- being able to maintain and establish relationships - well lets see how well authorities have done on that score, I have to be with OH 24/7 as leaving him on his own is dangerous, I cant even take a shower without listening out for him asking for help. We have food delivered to our home or else we would starve. I am a prisoner in my own home. He has been under the NHS continuing Care Regime since 2009 where care workers are supposed to be provided. We have had provision for various reasons for about 8 months out of the last 39 months, 25% . Last year was especially bad as at the turn of the year it was known that my father was ailing with lung cancer, I spent 3 months begging social services under respite for me to provide ad hoc cover so that I could visit him before he died, none was provided, he died on May 7th I was not even given any cover so that I go to his funeral. This happened in in 2010 as well, as my Nan died, who I was very close to, again no cover provided so that I could go to her funeral. My mother is in her 70's I have not seen her for over a year so I guess that will be the next family funeral I will miss. My eldest brother is severely LD I haven't seen him in 3 years.

We had a phone call from our care coordinator last night stating that care provision for OH is being supplied on the basis that I need to go back to work, not on the basis that he needs care provision. The implication being that if I do not find work I will be expected to carry on my 24/7 duties. I have written papers to the people in charge previously with risk assessments showing what  potential risks they are taking with my health and that of my OH. But no one gives a shit or believes you until someone reaches crisis point.

same goes for rest of the list -
being able to access medical treatment - been trying to get a MOT life-scan for last 6 months as things do not feel right in my worn out body.
respecting physical and mental well being - I love cycling , it used to keep me sane and fit, now I am confined to trying make do with an indoor Wii cycle which is not the same. My weight has become a problem as I can not exercise or get enough sleep. I have reoccurring minor neck / back / knee problems because of all the lifting I have to do. I have not had more than 3 hours sleep straight for 4 years.
respecting right to make choices - my life is ruled by the times help is needed to be given to my OH, I cant just decide to have a lie in, go out shopping, cycling etc I have not been able to earn a living for the last 4 years making financial restraints on a very expensive illness where OH needs suitable housing, transport and equipment.
being able to participate in community life - I do what I can via the computer as now with this blog, but meet real people, go to local meetings , IMPOSSIBLE.

Article 3: Right to be free from inhumane and degrading treatment

I would argue that many of the things listed above constituted inhumane treatment. I am being imprisoned in my own home,(which is also an Article 5: Right to Liberty issue )  by the authorities that do not seem to care about my freedom. I am suffering extreme cruelty, constantly being pushed to limits of human physical and mental capabilities. What I have been put through is akin to torture, sleep deprivation, lack of human contact, hard physical labour, prisoners get treated better.

Article 2 : Right to life

Take reasonable steps to protect life, I may be sort of okay at the moment, but what has this experience done to shorten my life.

Article 14: Right not to be discriminated against

As a carer of a severely disabled person I have been discriminated against. I am ignored because the authorities know I can not get out to protest against my and my Hubby's treatment face to face. Hence why in July 2010 I went on a short hunger strike as the only protest I could make from my home. I have been at times unable to look at possible suitable housing because no one was available to look after OH who was too ill to attend, no quarter was given. Hubby is constantly discriminated against directly, like how difficult it is to get a suitable disability car for him at a price we can afford, care-workers, housing, shopping, travel, access to treatment he has had operations cancelled because of his disabilities and age.

I am pretty sure there are other parts of the Human Rights articles that have been affected as well, Article 11 The Right of assembly and Association, Article 4 The Right to be free from Slavery or forced labour seems pertinent.

Life as a carer, fun fun, fun, NOT...

I’m not Superwoman,  just a Caring Wife.

Just a note to make a wares, 

just in case someone cares. 

Every time he cries with the pain, shouts and blames me, who is it in the firing line, is

it superwoman ? oh no its just me.

Every time suicide is in the air, his pain he can not bear, who is there, is it

superwoman ? oh no its just me.

Every time he angrily asks, why the medicos are not doing their tasks, who is there, is

it superwoman? oh no its just me.

Every time his feet fly off his chair, spasming in mid air, who is there, is it

superwoman ? oh no its just me.

Every third day who is there to collect the sh**, not a wife’s normal bit, is it

superwoman ? oh no its just me.

Every six hours to collect the p***, without a miss, is it superwoman? oh no its just me.

Every time he needs shifting who is doing the lifting, is it superwoman? oh no its just

me.

Every time he passes out, with blood pressure no doubt, is it superwoman? oh no its

just me.

Every time a new drug supply, who is it to apply, is it superwoman? oh no its just me.

Every time we ask for help and the medicos whelp, who is there, is it superwoman?

OH NO, WHY IS IT JUST ME?   

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.

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 !

An Idea - Carers Virtual National Strike

Introduction

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

http://onmybiketoo.blogspot.co.uk

twitter onmybiketoo

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.  

Funding

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.

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.