Why do people constantly take the pi** and think we don't know they are ?

Some recent examples of this,

Example 1 - letter back from Peterborough Hospital following complaint made regarding xray machine landing on hubby's leg. "the safety feature on this machine is working within safety parameters", if it was safe why did it hit my husband with such force it threw him forward in his wheelchair hurting his leg in the process ?

Example 2 appointment letter for an appointment in 10 weeks time even though we have stressed the urgency of the situation to several people who seem at the time to agree with us. After phoning up, get it changed to 5 weeks time which is more reasonable.

Example 3 still interviewing carers that have absolutely no work or life experience, despite constantly saying what we need.

Example 4 I say I need financial help to take an educational course and get offered an eighth of the cost, it might as well be a single penny for the use.

Example 5 local new hospital think it okay to put cobble stones from the disabled car park to the front entrance. Arrive shaken not stirred !!

Our Holiday in Tenerife or "that will be an extra 20 Euros"

 The Journey to the airport.

02:45 on the 26th April we set off for Luton Airport all packed and ready for our holiday in the sun. We arrive at the airport surrounds at about 04:00 and phone the people that are going to “meet and greet” us and take our car away for storage during our hols. I mistakenly think we will be able to unload Hubby right in front of the terminal and meet the assistance team right there. No we have to proceed to a drop off zone which is at least a 5-10 minute walk away from the terminal. Guess what the disabled drop off zone is closed for our use and is not of much help anyways as there are no significant dropped curb areas to decamp from the car. So I park up unload the luggage and then have make a herculean effort to get Hubby out of the car as the seat is now at a very uncomfortable height for me to lift him into his chair curb-side. It is cold outside and even though the help point has a small shelter Hubby is getting very distressed at being cold. As many reading this will know having a spinal injury means that more often than not you can not maintain your own body temperature. I am left in the uncomfortable position of not being able to leave the luggage to get Hubby in the warmth of the terminal straight away because it is too far away and to leave the luggage a security risk. No shelter in the car as there is a 10 minute waiting limit. After what seemed a very long wait because of our special circumstances, but only ten minutes, the assistance guy appears and helps us to the terminal.

Lesson learnt , if you are very disabled on your own or just the two of you with luggage you must telephone Luton Special Assistance (07979627278) to meet you as you arrive so that you do not have to wait in the cold. A letter is on its way to Luton Airport regarding the unsuitability of their disabled drop off zone and the fact that it was closed on our arrival. We are all used to ground level decamping from our cars as in the parking spaces that we all use so we all need those dropped curbs. We need somewhere warm to wait if the assistance is not going to meet us not the open bus shelter arrangement as currently provided. Also are the help buttons at a height that can be accessed from a wheelchair ?

Luton Airport Terminal.

The special assistance people are generally very kind and seemed to understand if some of their clients are a little grumpy at being man handled. After checking in with no problems, much relief felt when they did not even question our extra bag of medical equipment except for the fact that I was not allocated a seat directly next to my Hubby. After security and passport control we were taken to a special waiting area to await being boarded. We left carrying out Hubby’s urine catheter as late as possible as it would be touch and go that we would land in sufficient time within the six hour window. Unfortunately we were delayed by an hour so all our planning was to be for nought and we ended up doing it discretely on the plane before we landed. We were loaded up onto a scissor lift pod pre boarded via a very uncomfortable aisle wheelchair. This model was a lot lower than the one provided at the bigger airports so makes transfers a lot harder. On board due the flight being very empty the Thomson air crew were very kind and realised that I needed to sit next to Hubby to help him during the flight. I had to hold onto his legs during take off and landing and during taxi as the bumps made his legs spasms. The extra leg room afforded was not sufficient to stretch out his legs but did mean I could deal with them when they started to move. Whow! the seats on these budget airlines are thin and there is no where to put your arms.

Tenerife South Airport.

The Aisle wheelchair here was even worse as it had no arm rests making Hubby’s lack of trunk control very dangerous as he needs support to sit upright. The special assistance people got the hump when I would not let them push his wheelchair and wanted them to help instead with the luggage. The reason is that Hubby’s small wheelchair wheel at the front keeps hitting the back of his left heel and I know what to do to stop from happening, I know they would not, I was trying to prevent them getting shouted at. You can’t help some people. We were met by the Accessible Travel rep at the gate and shown to our accessible transfer bus. Hubby did not enjoy the journey he hates being strapped in the back of such vehicles in his wheelchair as it makes him feel sea sick. 25 minutes and we arrived at the hotel.

Mar y Sol Hotel Los Cristianos

The hotel looks pretty from the outside, white washed walls, greet the traveller, waterfall in front and little seating area with an interesting wooden walkway guiding you to the open spacious reception. On display at the moment is a golf cart that makes playing Golf a possibility for the less non able amongst us, i.e. Paraplegics with upper body strength. The check in procedure was much like other hotels with a porter to take our luggage to our room. We were assigned Room 3316 which to get there you take the lift from the 5th floor reception down to the 3rd, walk along a corridor at the back of the restaurant , past the table tennis, oversized chess, and dart board. Then past on the right, is the first pool , a paddling pool that is used for walking therapy, steps in one end ramp the other and why we were conned that there was a zero entry pool on site. Next, a large pool for serious swimmers with hoist. We then took a metal ramp up to our floor, from which we could see the super heated pool and hoist.

Our room was an immediate disappointment and reminded us of some of the seedy motels we had stayed in on our many road trips in the USA. It had not been redecorated since we guessed the 1980’s judging by the style of the fabrics. We felt the room could have been a show case for the hotel as being on the end of the building it had extra windows letting in all of that precious light. The “room” was made up of a bedroom, bathroom and sitting cum kitchen area, plus spacious balcony directly over looking the warm show pool and restaurant.

The Kitchen Area : supplied with a gratis litre of water on arrival but no kettle, cloths or washing up liquid. Cupboards have 3 saucepans, chopping board, plates, glasses, utensils. 2 ring cooker, Oven and small fridge. With everything being so old it all looks grubby / dirty. So if you get one of the older rooms be prepared to do some cleaning if you are a carer for any immuno-suppressed traveller. There was also a dining table and three chairs.

The Living Room Area: Tiled floor through out. Old style TV and white painted stand, Sofa that can be made up into an extra bed, coffee table that we put out of the way as it impeded Hubby’s movement in the room, another small table with the phone on, white painted book cabinet, and a wicker chair. We looked around for the TV remote there was not one so we dialled reception. “That will be an extra 20 Euros” we were told much to our annoyance having already paid an extortionate rate for the hotel just because it was supposed to have facilities for the disabled. Once we had obtained said remote it was debatable whether we should have bothered, we could of course improve our German and Spanish as the channels mainly catered for these clients, English speakers were supplied with Sky 1, Sky News, Eurosport, Cartoon Network, Sky Sports1. One of our funniest moments was watching a Tommy Lee Jones film in German that when the Mexicans were speaking had German subtitles, I know small things please small minds. And then as a reminder of a holiday we took many years ago in Mexico, where channel 6 was the sex channel, we had what we christened channel dirty thirty.

The Bedroom: plenty of storage for clothes as supplied with built in 2 side tables, wardrobe and chest of drawers. Also door access to balcony. Door width could have done with being a bit wider for us as we had difficulties getting the electric wheelchair in and out of the room. Hubby had a hospital type bed which we paid a pretty penny for ( supplied by LoRo equipment hire) and already in the room for us on arrival. Disabled peeps BEWARE ! the mattress is not of a sufficient thickness to guard against pressure sores and because the bed had metal latts underneath, extremely uncomfortable. It has left Hubby with a sore achy back. Also if you want side safety bars, much to our annoyance “That will be an extra 20 Euros”. We had already paid handsomely and now it was beginning to seem like everything we asked for was Extra ,Extra, Extra. My bed was not much better , one up from a camp bed with a water proof mattress cover that did not fit. This hotel also uses the old fashioned, sheets, blanket and bed spread, which some will like others not, personally I prefer Duvets. The pillows were very worn , some thinner than others. But having said that all the linen seemed to be old but clean.

The Bathroom: Ours had a small bath plus a wet room area. The sink has room for wheelchair bods to sit underneath. Taps are not easy use taps, but they have tilted the mirror to make use by those seated easier. Standard height toilet that a commode can be placed over. Again our problem was safety as there were tiles missing and the water did not run away down the drain making the tiled floor extremely slippery for me as an abled body person. There also does not seem to be hot temperature safety cut out. On the plus side the shower did have a hose long enough to reach under commode, but using the controls by those with limited hand function would not be possible without help. There seemed to be no mechanism to extract steam from the bathroom. Two small pieces of soap were provided and plenty of towels.

General: most light and power outlets were at a height that made them accessible for those in wheelchairs. Please note there is no heating in these units therefore if like Hubby you are unable to control your body heat you will need a heater and of course “That will be an extra 20 Euros” . We have a lot building work going on around our road at home so one of our desires was to get away from the noise and dust created by construction machinery. No such luck we had drills and power saws three rooms away, painters right outside scraping away at the white washed walls, and inconsiderate fellow guests allowing their doors to slam behind them. So by day 2 we were not happy bunnies and asked to speak with the tour rep. Platitudes were exchanged , but we were left with the like it or lump it feeling so tried to make the best of a bad situation. Also to note you will not find the usual information folder in your room, so will have to hunt for information regarding nightly entertainment, evening buffet theme, a la carte menu. You do though get given a leaflet which shows times and some of the general information that you will require.

The Restaurant: you have no choice at the hotel in that you at a minimum have to take half board and the dreaded hotel buffet. Having travelled the world very few hotels do this well, with the exception of the top hotels in the UAE who have it down to a fine art. Unfortunately as we pretty much expected, food was not kept hot and good ingredients were ruined through over cooking and standing. Fairly good choice of cold salad type foods. Most cooked hot meat were cheap cuts, dry, boring and rubbery, even that which the cook freshly prepared in the pan. Distinct lack of hot vegetable choices. Canary style potatoes were nice if you could pick out the ones that did not have black rotten bits in. French fries style chips available. Several different types of bread including some of the more interesting German style rye breads, some times fresher than others. All of the pastries, we tried, small pieces of cake, including breakfast Danishes, croissants were stale and extremely unappetising. In other words you would not starve but the hotel good do a lot better with the money you pay. The A La Carte Menu for during the day was to say the least unimaginative and not good value for money paid. Alcohol was more expensive than that found in the bars on the sea front and a large bottle of water cost Euro 1.70 which same could be bought in local Spar shop for 45 cents if able to get away to go there.

The Showcase Pool: everyone seemed to congregate around this pool being the warmest of the three, having fountains and water features. The hoist was in constant use and most of the time a life guard was on duty to help with this. SAFETY : please note it is up to the guests concerned to make the determination as to whether your particular disability precludes you from safely using this hoist, the life guard will not bar anyone its use. This led Hubby and myself watching in horror and holding our breath a few times when we saw people using said equipment that really should not have taken the risk. Personally it is my opinion that you take a huge risk of falling off if you have limited trunk strength, arm function or have bad spasms. Therefore Hubby falling into all three categories could not use this piece of equipment and was not able to use this fine pool for the duration of his stay.

The Staff: most we met were helpful and flitted happily between Spanish, German and English with ease. Having studied all of these languages on and off for many years and still not being fluent in either made me rather envious.

After filling in a feedback form I had a meeting with the German owner and founder of the hotel. He seemed to be genuinely disappointed with our reaction to our experience and explained that many of our problems were due to there not being the Hotel Guest Relations Manager available at the time of stay due to sickness. Apparently a Kettle could have been made available plus cloth and washing up liquid. All the extras we had to pay were due to the setup of the contract with Accessible Travel who should have explained and asked a lot more questions regarding our requirements prior to us paying. Most Travel Agents have a fully inclusive price for their clients so that they don’t get hit with all the extras. He also thought that due to Hubby’s level of disability we should have been put in a refurbished room type with extra wide doors, better safer bathrooms etc. I had a look at some afterwards, the rooms are like night and day! We would have managed a lot a better in one of the newer rooms.

For my part I will be sending the Hotel my detailed feedback and some links to manufacturers of pool ramps so that all guests can get into his pools safely no matter what level of disability they have.

http://www.thewheelchairsite.com/wheelchair-pool-ramps.aspx

http://www.recreonics.com/pool_access_ramps.htm

http://www.a1-wheelchair-ramps.com/types/wheelchair-pool-ramps

The Journey Back.

The Orobus picked us up and this time Hubby was more to the front and had a lot better ride. The Driver helped us with our luggage to the assistance point, where we checked in. Then for some reason even though our flight was going from gate 21 we with a few other disabled peeps were left at gate 5. Where we waited and waited. Eventually they re appeared and took us yes you have guessed it to gate 21. To our utter horror people were already boarding, so instead of being able to get Hubby settled before the masses started filing past we had to fight for space against the able bodied travellers. I hate it as I then feel rushed and pressured . I am doing all the safety lifting so I could have done without this. On top of this some guy and his wife were pissed off because they had just paid for extra leg room and we needed to take their seats. The Thomson Flight Manager thank goodness stuck up for us when I explained what I had to do during the flight to secure his legs. We thought we were off only to have to return to the parking spot again as someone had not done their job with one of the water valves. So of course I had to gain permission again on a full flight this time to discretely carry out Hubby urine catheter on board. Trying to explain to someone not medically trained that if I did not do it Hubby would get seriously ill, not sure whether she believed me but at least she tried to be understanding. On our landing back we found out that the people handling Hubby’s wheelchair in Tenerife had partially dismantled it. So he is already loaded up in the Aisle wheelchair at this point in severe pain and they want me to put him in his wheelchair with no back to it. On top of that they bash his right knee on the side door to the scissor pod.

 Poor Hubby… treated like a piece of meat… yet again… but at least it did not cost us another 20 Euros for the privilege.

Another Scary Week

Hubby has got another UTI and isn't feeling very well. He various difficulties with many antibiotics and needed to have hospital grade stuff via an IV. Did not want it at home because of the possibility of an Autonomic (AD) attack if something went wrong, so off on Tuesday we trotted down to the local hospital, where we were kept waiting 6 hours in total for a 25min procedure. Told to come back on Wednesday for 2nd dose. So I rang on Wednesday to get the best time to turn up to be told we don't want him here he has to have it done in the community.Apparently only a Consultant can say so out patient treatment in a hospital our GPs had unwittingly overstepped their area of authority. So we waited for a senior nurse to give his IV in the evening and hoped everything would be okay. Especially in the light that he wouldn't get to hospital in time if an Ad attack did manifest itself as he can not travel in an emergency ambulance due to his spasticity. Everything went okay.

Thursday having been up most of the night with him as he was in so much pain, I rang the GP to ask for help, but as usual no one knows what to do. So we agree to just top up his Butran patches for now as does not seem to able to take anything else in high enough doses to make a difference. Stuff that he could take makes him feel worse than that we are hoping to overcome.

Meanwhile I can trying to straighten legs that don't wont to go straight, watching him trying to be sick, and writhing in pain that I can not treat.

So its another scary week here without the medical backup that we need for my piece of mind.

Day to Day Frustrations

I thought today I would write of some of minor irritations of being disabled in a wheelchair. Minor because they are not life threatening but irritating nether-the-less as they make a difficult life even more so.

Going Shopping:

Well first you have to think about if there is some where safe to park or else you will have a wasted journey. For example when we go for a haircut in Werrington P'Boro there are no assigned parking spaces so we take a gamble every time when we park that some arse-hole does not park tight up against us so making it dangerous for me to get him back into the car. We have a label on our car saying we need extra room on the passenger side of the car. Same when we go to Physio at Cygnet park. Now there is a development that really annoys me, effectively brand new but not disabled friendly at all,difficult entry doors, exit release buttons out of reach, no designated parking. Any independent wheelie user would have to stand outside waiting to be let in and if the business is on the top floor hard cheese in many cases as lifts are far and few between. All probably within the relevant building code but unhelpful nether-the-less.

Shopping in malls is a hit and miss affair, some stores better than others regarding access. In the Serpentine Green centre near us WHSmith deserves a demerit as if a wheelie wants to use the sweets dispenser or get to the fridges on the immediate right hand side of the store there is not enough room to get your machine round.

My biggest bug bare is Sports Direct in all stores I have visited there are parts of the store that are inaccessible to wheelie shoppers. A special mention to the one in Leicester city centre in which I felt extremely uncomfortable as should there have been a fire or emergency evacuation I am pretty sure we would not have made it out safely. Everything is so on top of each other there are no clear lines of sight to the lifts, or able body exits. The tills are at the back of the store and badly laid out for access by chair. Everything is piled high making their stores both difficult to shop in and claustrophobic.

Sale time in most clothes + book stores is a nightmare as many retailers forget about safe wide enough access and egress in their hunger to promote their sale goods. Other stores do not adequately control staff carrying out stock replenishment and leave new stock blocking up the aisles, getting out far more than they can deal with at any one time.

Oh and then there is electrical stores, including Tesco's, Curry's, Comets. They showcase 3d TV's with the glasses in display units that make it impossible for the average wheelie to use as the bases prevent them getting near enough, oh they will if you ask get you some glasses out of the back, but again you are being treated differently highlighting your disability. Then there are those displays of laptops that you cannot use as they are stuck to the counter at a height that makes it impossible for you to try them out like everyone else. And lets not forget Tesco Direct and Argos where their catalogues are on desks way too high for the average wheelie user.

Eating Out

When able bodied people consider the prospect of eating out they think of what kind of food do I fancy? Well so does the wheelie user but quickly followed by, will the tables be high enough for me to sit at the table, will it have legs that mean my foot plates wont fit over, will they have ornate cutlery that wont fit in my hand strap, will I be able to use their drinking cups, will I have enough room so that I do not feel panicked by not being able to make a speedy exit. Most make special provisions for children but seem unable to have a few tables stashed away that conform to height and feet type to make things easier.

Driving about

Pot holes are a nuisance to everyone but to the wheelie user they can be extremely painful, last thing a wheelie in a WAV needs is to be tossed about like a salad in the back. Same can be said for sleeping policemen, ramps etc and to those drivers behind me that get annoyed because I slow right down to navigate these, BOLLOCKS !!!

Booking a Holiday

I used to love planning our holidays I would research on the internet, get some brochures from the travel agent and then go and book it at what usually having done my research a pretty good price.

Now I have to find out can the airline cope with our need to be facing a bulkhead, am I allowed to take his prescription medication into this country, does the hotel have a wet room, zero entry pool, raised beds, how about the transfers, what medical cover can I get, what emergency medical facilities are available, is there any accessible trips we can take. Then because of all the special requirements can we really afford it.

Still here....living the same crap day in day out.

Have not written anything for a few weeks, as trying to just get on with it. Last week we had to stand down one of carers after a 04:00am argument over what he could and could not do. We like many in our position are having terrible problems finding the right team to look after Hubby. When the agency pays £7.58 per hour why am I surprised, when we get dead-end people in a dead-end job.

The system sucks, to get this provision of care you have to pass an assessment proving ongoing medical nursing need and not just social care need, but you don't get provided with professional people of that level, no you get people who have never done a days caring in their lives, people with lots of personal baggage, no personal discipline or confidence to do a good job. I know this is not everyone's experience, but it is ours.

Hubby is still struggling over the big decision as to whether to submit to the Baclofen pump operation, and I am desperately trying to hang in there giving him the support he needs to make what I think is the only decision without pushing that down his throat.

Meanwhile he is having a horrible time with the pain and spasm, talking regularly about ending it all, the story line in Emmerdale is not helping either. Ever since the x-ray machine at Peterborough City Hospital crushed his left leg his rectus femoris muscle looks like it is ready to pop out of his leg, which of course is extremely painful on top of his already trashed knee.

I since we now have carer cover am actively looking to get back to work as a Project Manager in the engineering fields. But I know as soon as someone sees that you care for someone they run a mile. It is their loss I know , but still hard to take as I do have a pretty sound CV with oodles of experience.

So to give you a picture of what it is like for us at home, lets take yesterday as an example,

Having spent Saturday night up at least once an hour to adjust his legs and try and make him comfortable, 06:00 arrives so his urine catheter has to be done, so I drag my tired bod out of bed yet again, get the stuff, sit him up over the edge of the bed, drain off the urine lift him back into position on the bed, physically , forcibly straighten his legs, bring up his legs again, put the cushion pad in between his knees, stuff pillows on his right side to secure his legs from flopping over, flip his pillow, flick his toes as they constantly cramp. Then I can flop into bed again for a few more minutes before he asks for help again. This is how it is constantly through the night and we can not get the carers to do this so I can get some real uninterrupted sleep, instead like last night they stand watching me doing it all and when we try and get them to do it they mess it up hurting him terribly. Last time I looked I am not superwoman! why am I so...oo special to be able to do what these carers can not? Utter bollocks..

just after 08am we get TDB up but he is in so much pain that he very shortly needs to go back to bed for further stretching etc. No wonder my arms are like a Russian shot putters. We were supposed to get a visit from relatives y'day but had to put them off as I knew I would not be able to cope with his bad mood being in such pain and their need to be entertained. This is how carers/disabled become so isolated. So the day went on bed up, bed up over and over again.

So we are still here living the same crap day in, day out....

Unthinking, Uncaring, IDIOT...

I thought I would treat my hubby to a McDonalds breakfast yesterday. Imagine my horror as I turned into the site to find an articulated lorry parked across all of the disabled parking bays. Then of course you get the tough shit park some where else attitude from the driver. The car park was very full so we parked up poor TDB had to stay put and eat his in the car.

I have of course written to the companies involved reminding them why disabled parking spaces are sooooo important to those of us living with people with severe disability and have asked that they do a training session watching the YouTube video entitled Just 2 minutes, http://youtube/watch?v=e9EYh_Tr_Sc

Urrrgh....No One gives a shit....

Local Hospital gets it wrong again

Wednesday my husband attended the “Fluorescing” X-Ray dept at our local Peterborough Hospital for a Barium swallow exam of his throat. He is confined to his wheelchair being a C3 spinal cord injury patient. The x-ray machine had to be manoeuvred in an unfamiliar way to the staff on duty. We were assured that the machine had a safety cut out to prevent it coming into contact with Hubby.

Whilst the operation was taking place one of the members of staff operated the machinery in such a way as to move the machine onto Hubby’s legs, with such force that it momentarily tipped him forward in his chair lifting the back wheels. The staff then rather than using the machine to free Hubby straight away tried to extricate him manually, then realising it had to be done via the controls as his legs were wedged under the machine.

The staff checked Hubby out for obvious signs of injury there being none we left the hospital. Since the staff said they were going to fill in an incident report we were going to leave this there and chalk it up to yet another bad experience as a disabled person. Unfortunately though I have to report that Hubby has had significant pain in his left thigh and knee following on from this incident, although no bruising is evident so we will be making a formal complaint after all. Because of Hubby’s spasticity it will be extremely difficult to x-ray this part of Hubby leg to check for damage so this has put Hubby in an impossible situation.

What do we want from Peterborough City Hospital:

1. A thorough investigation as to why this piece of kit was able to come into contact with Hubby.

2. A thorough review of training in the equipment.

3. A review of the operating controls, are they confusing for the staff when the machine is operated in this different way.

4. An apology from the Hospital and an assurance that this will not happen to some other disabled person.

So watch this space and see whether they respond in a positive way.