Wheelchair Accessible UKHousing

An essay on the plight of wheelchair bound citizens in the rental housing market.

Unfortunately people who are unable to walk and totally reliant on a wheelchair will find there are many barriers to finding somewhere to live. If you are lucky and your incapacity comes when you own your own home, you will be able to apply for a disability grant to help with making modifications to your home as long as you don’t have over the prescribed limit in savings & income.

For those without their own homes that rent to provide a roof over their heads you will encounter several difficulties. Private landlords unwilling to provide secured tenancies, and local councils / social landlords that will not take into account your particular needs. You will be left with choices all extremely unpalatable and in varying degrees unworkable.  

I write from personal experience as we have been looking for a home, rather than a roof over our heads on and off for the last 4 years.  Currently we live in a first floor, small two bedroom flat, which although it has a tiny wet room is totally unsuitable and unsafe for both my husband and his care workers. We have written to the council regarding the reasons why we need to move and they have given us a high priority for housing that just does not exist, and only allocated us 2 bedrooms which is totally unworkable for us. We need rooms of varying sizes for the following, 

• 1 small bedroom for me to sleep in during the week so I can return to work,
• 1 small study / changing space for care-workers,  
• 1 small room / space to house a tilt table + all the spare equipment + charging space,
• 1 very large (4m x 4m) master bedroom capable of taking a hospital bed that can be accessed all around + another single bed so that I can look after Hubby at the weekends during the night and maintain some intimacy in our marriage. 

We also need a large wet room + separate shower / washroom to maintain separate hygiene with the care-workers. Then open plan living / kitchen space. Barrier free front / rear access doors and interior doors wide enough to easily manoeuvre an electric wheelchair through. Outside we need somewhere safe, sheltered for Hubby to sit to make sure he gets enough daylight to maintain his vitamin D levels which is very important to his bone health.  

  

So far we have been offered two bedroom bungalows which report to be accessible which we know will be totally unsuitable and lead to us swapping our current unsafe conditions for even more problems such as

• ·         serious infection control issues,
• ·         rooms not big enough to allow for free access of a wheelchair,
• ·         having to give away all our possessions to squeeze us in,
• ·         socially isolating Hubby even more than presently,
• ·         no storage space or room for rehabilitation equipment,
• ·         no cognisance taken of the fact that not only a home but a place of work for full time care workers .

It is becoming increasingly apparent that no one is interested in supplying housing that is fit for purpose for disabled people. They are supposed to be grateful for anything they are offered, even if it will contribute to deterioration in their health and hastening the day they will need to move to a nursing home.

So having increasingly despaired with the social housing market I turn my sights to private rentals. We would have to contribute more to our rent as the housing benefit allowances for private are not as generous, but as I fully intend to return to work as soon as possible this is not a big issue if we can get a landlord to work with us to make a bungalow accessible. 

We came across somewhere that we could have made perfect for our circumstances, it needs some alterations but has lots of potential. We got past the first hurdle of the rental agencies that usually suddenly make the property unavailable to disabled enquirers, got to speak to the landlord to explain our situation. He seemed very understanding of our plight, I explained that we would need to change the on suite bathroom into a wet-room out of our meagre savings, then once moved in apply for a disability grant for the other changes that we needed.  That we would make changes that would not devalue his property. Also that longer term if my work situation panned out we would look to buy it off him. I also explained that we would need some sort of secured tenancy as to apply for the grant the council want to know you can live in the property for five years. Anyway we left the conversation at that point, as we had to involve the estate agent he was using to manage the rental. So I talked it through with the agent explaining the different type of rental agreement we would need, as she had no experience of other types other than the short-hold, 6 month, 12 month assured tenancies more usual in the private rental market. The estate agent and landlord subsequently had a conversation and unfortunately the landlord was not in a position to grant us a 5 years short hold or an assured tenancy so our perfect property fell through.

I have come to the realisation that this means that in most cases the private rental sector is totally unavailable to mobility restricted renters, but the local authorities / social housing associations are not providing suitable properties either, does not sound very equitable or fair to me, or looking after our most vulnerable in society, does it you?

Any ideas people how we are to find suitable housing that meets our needs.  

If is quite obvious that the local authorities do not have the expertise to deal with housing the severely mobility disabled. This leads to their housing needs being put in the too difficult basket by the housing managers leaving the disabled without suitable housing for very long periods of time. I would like to suggest a new means tested system. If the disabled person does not have assets, capital or compensation pot, that the local authorities give them a personal budget to either build or buy housing that can be adapted. With that grant being repayable on the death of the disabled person, either by handing over the house for someone else to use or by selling and repaying the grant. This would mean that the disabled could ensure that they have the housing that fits their particular circumstance rather than what the local authorities think they need. In our case we would need £200k to find a 3 bedroom bungalow that we could adapt to our needs within that budget. (175k cost + 25k adaptations ) . I know that would mean if my husband died or became too ill to live in the property I would be homeless but I could accept that if that meant he could live some where suitable.

Readers will think this too expensive, but it is only marginally more expensive than the new not fit for purpose so called accessible housing that is being currently built or actually not being built as there is a national shortage. Also there are savings in poor health outcomes that the disabled in poor housing currently suffer.

We need some out of the box thinking to help get us out of the current housing problems faced by the severely disabled. 

Disability & Caring : Lots going on lately personally & politically

Lots in the news affecting those who care for the disabled, recently. Very easy to get very depressed with the constant stream of ill thought out comments and policies coming from the government. One light in the gloom was the debate in parliament about the daily struggles of family carers. The ministers that spoke seemed to "get it" , but I seriously doubt whether the kind words and recognition will turn into concrete policies and finances to help those in such a position. They talked of making sure respite was made available for carers, this is very important but with competing demands on council budgets likely to get squeezed out, yet again. I for one have been told that if I am able to get back to work , even though I will look after my Husband at weekends solo my allocated respite will have to be used to cover any out of course work shifts, I do not think the politicians had that in mind when they coined the term "RESPITE" .

Benefits & Support :
I am glad to see that government is having another consultation regarding the new 20m rule for proving whether you are able to walk unaided or not, being the ruling factor as to whether you will be able to get access to the mobility scheme or not. Now whether they will listen or not is another story. Does not directly affect us as Hubby is totally immobile. The bedroom tax saga rolls on with , ill considered comments by Lord Freud in a letter he has written to local councils regarding redesignation of rooms as not bedrooms and the charges for rent there after, made me extremely angry as it will indirectly make the building and redesigning of homes for the disabled financial suicide for Housing Associations. More thoughts later re housing.

We now have one good care worker allocated to us, still very slow process finding the others we need, but I guess we will get there. No doubt there will be some last minute crisis management, NHS good at that, when I get a new job.

Our Fresh Wheelchair Accessible Vehicle:
What a disappointment, our second hand Kia WAV Evolution has been. Has cost us a lot of money in replacing the fuel pump, now the reversing sensors have gone. We bought a "Dog" as my Hubby would say. For those thinking of buying such a vehicle by the way, yes loading / unloading is space efficient, but not easy as you end up crawling all over the wheelchair users to connect all the restraining straps. Once the user is in place you can not open the passenger door to get to the left hand side of the user, which is a pain in the neck. The front straps never get tight enough to be totally safe as they have to be fed around the wheelchair sides from the anchor point because going in a straight line would mean them flipping up users footplates, hitting their legs or  feet. Oh and being a diesel, yuk! noisy, non responsive piece of crap.We have nick named it chugger. I would personally recommend a side loading up front passenger, like that of the Chrysler Voyager as being a better but of course more expensive option. As soon as I am back at work we will be looking to get rid.

Housing:
We are still stuck in our unadapted first floor flat unable to convince anyone who can do something for us that it is totally unacceptable. To recap, we have a wet room that is so small Hubby gets his feet regularly banged on the toilet when sat in his commode. None of the doors have been widened. We have carpets which are a total pain for wheeled conveyances. A lift the only access, that is too small carer plus user can not easily travel together in. Also too small for ambulance trolley. The building construction is such that no ceiling / wall hoist can be fitted. The rooms are too small for use of an electric wheelchair plus have any furniture, the bedroom likewise and care-workers can not access all around the bed, to use sliding sheets etc. We have no where to put the vital for his long term health tilt table that he needs. When back at work I will find a corner in the room we use for storage, as none is provided by the HA. Our flat is positioned right over the badly supervised bin room, where during the hot weather, we get the smells & flies it produces. Our next door neighbour is a heavy smoker and we have the pleasure of breathing in her second hand smoke all day, even though OH already has breathing problems and I have a history of bronchitis. The kitchen is totally inaccessible. The flat is dark contributing to OHs vitamin D deficiency and his danger of breaking bones.This leads to poor old OH being strategically placed in a spot in the front room in front of the telly, as moving anywhere else in the flat is a logistical nightmare. What a way to treat our disabled. So I follow with great interest the debates at the Housing 2013 this week on twitter. Some how we have to get the local authorities to wake up and build more wheelchair accessible bungalows. If it means building in US style timber framed buildings so they can be bigger without costing more then so be it. I would love to live in an american style home, they are warm, cosy, open plan, accessible and fit for purpose.  http://floorplanner.com/projects/26022765-new-floorplan/edit#assets










  

My Story - Updated.

My story in brief

I have been a carer for most of my life. I was born into a household in crisis. On the day I was born, Father was recovering in hospital from TB, my eldest brother of 2 fighting for his life with TB Meningitis. Father recovered, but we had to move home as our lovely cottage in the Quantock village of Holford, Somerset had to be fumigated. 

Mother struggled for the next 5 years with the help of her little helper, me, to keep the now severely mentally handicapped brother at home. One of my first memories at age 3, is of bathing my brother with turds floating in the water where he had messed himself. After our youngest sister was born in 1972 Mother made the painful decision that that she could not cope with looking after three children under the age of six, plus  l that was so ill. Eldest brother was taken into specialist care. The birth of her forth child was very complicated, she died on the delivery table at one point and soon after returning home it was obvious that she was having some sort of mental breakdown, the stress of seeing her eldest son depart from the house and the birth took its toll. Mother then spent most of my childhood in and out of mental hospitals, had inhumane amounts of ECT treatment , had her not inconsiderable intellect dulled by various psychedelic colourfully named drugs.This left me and my father to cope at home with the other two kids. I learnt how to cook from a very early age, wash, clean and all the other household stuff for the family to get by, while Dad concentrated on bringing home the family income such as it was.By the way just because eldest brother was not at home he was not forgotten and had regular visits from all of us, still a big part of our dysfunctional family.

As I entered my late teens I found the duties and expectations at home suffocating so left home at 17 to save my own sanity. I spent the next 20 years of my life building up a portfolio of educational certificates and work experience. When I worked it was in safety, project & engineering management. The highlight of which, 2004-06 reconstruction work in war torn Iraq, caring on another scale all together. 

June 2007, over the space of a few terrible days mine and my husband’s lives were torn to shreds, he became ill with a Staph infection that left him partially tetraplegic. Concurrently finding cancer on his right kidney. The remainder of that year was spent in various hospitals, me living like a hobo and him fighting for his life.

2008 we decide to try and resume our plans heading off to Australia, but by May 2009, a pressure sore caused by a spider bite and Hubby’s deteriorating health mean that we have to make the hard decision to return to the UK.

Back in the UK, homeless, penny-less and  somewhat surprised that looking after a Tetraplegic in a hotel is not considered an urgent situation. The real battles begin with a UK health system that is not geared up to help when you don’t neatly fit into one of their boxes. Hubby couldn’t be just a run of the mill tetraplegic he had to have complications with taking oral medications, none helping with his progressive, aggressive, spasticity and spasms.

Even though Hubby qualified for fully funded continuous care agency provision in October 2009, I am now looking after Hubby 24/7 day in day out. He does not sleep at night and therefore neither do I. His inability to tolerate hoist use, constant physio demands, forcibly straightening his limbs to relieve the pain of muscles that seem to be trying to rip his body apart mean looking after him is a very physical job.

I became so desperate at no one listening or taking action regarding our plight that in July 2010 I take the drastic action of going on a hunger strike, which got national media coverage and the local PCT did start to help a little. Since then we have had sporadic carer coverage, but most of the time I am still my husband’s 24/7 carer, still here, battling a system that does not want to listen or act to ease both our suffering. 

During this time being housebound I have kept sane by developing my social media skills, trying to get help for myself but also trying to support others in similar situations.

Since writing my story in brief in October 2011, I have lost my father to cancer May 2012. Again the local services let us down, I begged for 4 months for respite cover so i could go visit him, nothing doing. So I missed my own father's funeral, thats what it is like in the UK today. 

Today as I write things are slightly better we working with a new care company and they have managed to supply one good carer which means i can slip away for a bit during the day, with the promise of more soon to make a team, meaning I can now look for work with some confidence that OH will be looked after at home.

Disability & Access Vilamoura, Portugal - Part1

Yippeee Its holiday time ! This is an account of our latest adventure in Vilamoura Portugal.

Prior to leaving on the 21st April for our trip, as is usual for a disabled traveller , lots of pre planning and arrangements have to be made. Emails and letters exchanged with Gatwick to try and ensure that Hubby is pre-boarded and that we get the help we need, unlike other disastrous trips. We also had to enlist the services of Accessible Portugal www.accessibleportugal.com a small travel agency here in Portugal that can help with equipment, trips out, transfers etc.

Having pre arranged help with the Gatwick team, we phoned to announce our arrival at the Sofitel Hotel, they duly met us there and gave us all the help we needed with our luggage. This time everything went to plan we were pre-boarded in good time and they got word to Faro airport that we needed the electric chair to the aircraft at the other end. I would therefore like to publicly thank the Gatwick team for a job well done. Once on the aircraft we found that BA had slipped up and not assigned us a bulk head seat, but they saw sense and put us there anywhere. Unfortunately on this small plane Hubby being sat on an aisle seat was not good as one of the stewards trod on his foot coming out of the galley. The seats in this small Airbus were very low and extremely uncomfortable for a disabled person to sit in.

We were met at the airport by a friendly representative of Accessible Portugal and transferred safely the half an hour drive to the Hilton. By the way the roads in this part of Portugal are rather lumpy so expect to be thrown and shaken about in your wheelchair whilst in a vehicle.

Accessibility at The Hilton 

Room 2050 has two access doors, which are only slightly wider if at all, than a standard hotel room door, sorry I failed to bring a tape measure with me so I am unable to give the precise measure. These doors being fire grade doors are extremely heavy to open and therefore inaccessible to an independent wheelchair user to open without help. The peep hole is at the wrong height for a chair user. The primary door to this family suite opens on to a very narrow corridor, on the left is one bathroom which is designed for use by the able-bodied in the party and a total no go area for the wheelchair user if they cannot walk. Opposite this bathroom is a set of interconnecting doors then a semi built-in full height wardrobe which makes the corridor even narrower. The room then opens up into a good sized room equipped with usual standard non adapted hotel provided, desks, couches, side tables. There were no wheelchair height adjustable tables provided.

Firstly I would like to report that a productive meeting was held with the local Managers at this hotel to try and educate and illustrate some of the problems we encountered in the hotel, some fixes were easy to carry out, and some would require some longer term planning and authority from regional bodies within Hilton Europe. The outcome of the meeting was that we were moved to a different room where we could manage a little better. We sincerely hope that this report is read, digested and acted upon by Hilton Management to help others travelling to this and other Hilton destinations.  

We were allocated Room 2050. This room was accessed via the lobby lift. The lobby and public areas are well lit, level, uncluttered and easily accessible by wheelchair users. The internal corridors can be narrow for a wheelchair user to get by maid trollies and some are very difficult to turn around in without banging into the walls while manoeuvring. Some of the hall way floors are covered by carpet which may prove difficult for manual wheelchair users.  Where ramps are provided they are on the steep side making the possibility of tipping over in a wheelchair a very real possibility. Also some of the wooden bridges have slopes that are definitely dangerous for average wheelchair users to use unattended.

Room 2050 has two access doors, which are only slightly wider if at all, than a standard hotel room door, sorry I failed to bring a tape measure with me so I am unable to give the precise measure.
These doors being fire grade doors are extremely heavy to open and therefore inaccessible to an independent wheelchair user to open without help. The peep hole is at the wrong height for a chair user. The primary door to this family suite opens on to a very narrow corridor, on the left is one bathroom which is designed for use by the able-bodied in the party and a total no go area for the wheelchair user if they cannot walk. Opposite this bathroom is a set of

interconnecting doors then a semi built-in full height wardrobe which makes the corridor even narrower. The room then opens up into a good sized room equipped with usual standard non adapted hotel provided, desks, couches, side tables. There were no wheelchair height adjustable tables provided. At the far end is French style door opening up onto a narrow balcony. The balcony being narrow and on the small side is not accessible safely by an adult wheelchair user, there is no ramp and a step to negotiate of about 4cm drop plus the height of the door runners, by the time the average user gets over the door obstacles they could find themselves pinned against the metal railings.

Therefore the balcony is a health and safety hazard to a wheelchair user without extreme caution. The location of this room also means that this balcony only gets direct sunlight for one hour in the evening.

For a wheelchair user to move from the living area to the bedroom area via the interconnecting doors is impossible without removal of one of the doors. The door opening is extremely narrow, estimate about 70cm, only just allowing a 45cm seat width wheelchair to squeeze through, users must take care they do not damage their knuckles. Coming through the other way is even worse because of the position of the wardrobe not allowing the necessary turning circle radius. This Hotel made the mistake that most make in that the standard bed offering in the disability suites is a king sized bed, so prior to arrival we had to request two single beds. Disabled couples need the same amount of choice as everyone else, some can sleep in the same bed others cannot due the nature of the disability. Hotel also does not provide beds that are slightly higher in height than their standard beds, which would be of an advantage to most

with mobility problems. As I have often remarked before it is a shame Hotels in the luxury end of the market don’t start to look for adjustable beds as they are becoming more common in general in people’s homes. Managers and hotel interior designers need to acquaint themselves with how disabled travellers are likely to gain access in and out of bed. Some will hire a hoist, lots will use a sliding board, wheelchair access around the bed is therefore imperative. One other thing of note in this particular bedroom was the French door opening was on the wrong side so meaning access was impeded by the bed furniture.

The on-suite wet room at first glance is of a good size, looking closer though I found some errors. The sliding door opening is not big enough, but can be adjusted quite easily. The toilet bowl had been placed too close to the sink unit therefore making the placement of a commode over the toilet impossible. One of the grab rails had been bolted down in place as well, causing a “bump” hazard to those moving around in the room. The shower head provided was the same as in the rest of the hotel, this though being ascetically pleasing to look at, would be extremely heavy to use by a disabled person with weak hands and also difficult to fit underneath ones bottom when sat on a shower chair.

The hotel had provided a long shower hose so well done in that regard. The shower controls may be difficult for those with hand issues to use as there is nothing definite to grab hold of. An able bodied person would also have to adjust the height of the shower head for a wheelchair user to use independently. The signage on the controls needs to be bolder and clearer. I am not sure whether the hot water system has a hot temperature safety cut off, but a definite safety issue if not in place. The water was not hot enough to be an issue when I tested it. The drainage in this wet room was excellent, best I have seen. Floor tiles did not become particularly slippery when wet, although usual caution should be employed as it is not a definitive non slip material as provided.

Two other incidental notes, the two big oval mirrors could have been a bit lower so to allow use by a wheelchair user and the intruder safety catches (door chains) had been put a bit high up and on the wrong way round so they do not work.




Out and about in the hotel grounds, there are no accessible pools either by pool hoist (which I do not recommend as not accessible to all disabled) or ramped access. The grounds have steps everywhere which make navigation around the site extremely challenging. The majority of doors to the outside are too narrow and barely accessible to a wheelchair user. Larger wheelchairs will not fit. 

Having seen various photographs of the Spa I dare not go and see how inaccessible it is. I also note that the hotel mini bus does not take wheelchairs, therefore discriminating against Hiltons disabled customers as they are not able to easily access the Hilton facilities at the beach, I have also noted the lack of alternative accessible transport available in the area, with the exception of one of  the tourist bus-train vehicles that takes wheelchairs.

We were kindly moved to a one bed apartment, 0010. This room also had to have some minor adjustments made, it was found that with the standard double bed there was insufficient room for a wheelchair to get into and around the room. Having furnished the room with 2 single beds this situation remedied itself. The hotel also nailed 12cm high blocks onto the feet of the table so that a wheelchair user could eat at the table in a fashion. They also removed a coffee table to allow for free movement of a wheelchair. The balcony has similar problems to the previous room so if we use we will have to be very careful.

I have therefore recommend to this hotel management to carry out the following alterations,

Short Term

• ·        In Room 2050 move the wardrobe over another 15cm to make more room for turning.
• ·        Provide 2 wheelchair adjustable tables, 1 for the restaurants, 1 for room. No more or less than you do for children in providing high chairs.
• ·        Lower the room mirrors slightly and fix the door security latches and peep hole.
• ·        Provide a ramped access to the balcony and carry out a full risk assessment as to whether it is wide enough to be safe.
• ·        Carry out an assessment whilst sat in a wheelchair of safe access routes around the hotel then provide a special map for disabled customers.

Longer Term

• ·        Look at all doors, widen where necessary.
• ·        Assess all ramps & bridges for steepness, are they safe for wheelchair users to use, if not fix.
• ·        Make at least one of the pools accessible via a ramp , you will also have buy a pool wheelchair, it would be appropriate to make a small charge to rent this, so recouping cost of this.
• ·        Next mini bus bought should be capable of transporting a wheelchair.
• ·        Look at changing shower heads to lighter ones. Make shower controls easier to use and markings bolder.
• ·        Look at making the spa accessible.
• ·        Do some research regarding good heights for beds for mobility restricted customers.

To Senior Hilton Managers, do not rely on architects to get it right, there are specialists in accessibility, use them. I wonder how well you have done at the new Vilamoura Conrad Hotel?

Lastly every Manager in every Hilton Hotel should sit in a wheelchair and experience their hotel from that perspective. This makes good business sense, as Europe’s populations age, and medical advances mean that people are now living longer with long term medical conditions, these people want to travel on holiday and business just like everyone else. 

Feedback from a more general point of view, very limited food menu available this time of year, room service menu very small choice plus every time you order there is a 5 Euros tray charge. Not all the restaurants on site are open. 

We will tell more about our adventures as we explore the area.

Mobility Accessibility " Build it in, don't Exclude it out"

Most builders , hoteliers, landlords if you have a conversation with them about including accessibility in their building will tell you of how difficult it is, how confusing the regulations are, as an excuse as to why it does not figure on their collective radars unless confronted with a situation they can not get out of.

I know in certain situations there is a need to build to the full accessibility standards, providing the ramps , hand rails, contrasting colours, sound aids etc. and the more of this the better of course.

I would like to get people thinking of what they can do to make everyone's environment more mobility accessible and not to the exclusion of the able bodied, giving a little more choice all round.

1. Showers -
If you are going to have a separate shower and bath , why not consider making the shower a wet-room area? Wet-rooms can look very stylish / chic and if the opening wide enough allow access to a wheeled shower chair. They are easier to clean as well.

2. New build / Refurbishments -
Why not make the doors wider than the norm, it does not cost that much more, allows access to wheelchair users. Hotels easier access for those hostess trolleys, residences easier to move in with furniture.

3. Steps & ledges.
Is it really necessary to have that high lip to a patio door , that step to the front door ? Able body people will you never have a visit from a wheelchair-ed friend member of family?

4. Luxury Hotels.
You supply high end furniture to your hotels, why not investigate whether companies do stylish high-low reclining  beds. Even more luxury everyone would love.

5. Restaurants.
You supply parents with high chairs for their children, why not adjustable(height) tables for those in wheelchairs ? When buying new tables do you think about whether someone in a wheelchair can get their foot plates under the table ?

6. Carpets.
Does that carpet have to be a thick pile ? Tiles can look great, are easier to clean and allow easy pushing for wheelchair users.

7. Lifts (Elevators).
Is the lift you are building big enough to take an ambulance trolley, electric wheelchair plus attendant / carer ?  Does it have a low set mirror that allows the disabled person to see how close their feet are getting to the edge. Dual controls at a good height to allow for not being able to reach over / turn around to operate.

8. New Pool
Make one access point ramped, not all disabled people can use hoists. People love zero entry pools, they can sit in the shallows keeping cool, older people find steps difficult, severely disabled people find floating out of a wheeled pool chair a lot easier and safer.

This list could go on and on, but hopefully has been thought provoking enough to get everyone thinking about what they could do to make things a little more accessible, for EVERYONE.

look around you, while you are refurbishing / building , at what YOU can do and not at what you can't do.  



       

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?