Accessibility issues within NHS hospital’s for Disabled patience.

Let’s face it not many people love being in hospital at the best of times it’s not the most dignifying or pleasant experience sometimes, but being in hospital isn’t easy when you have Muscular Dystrophy or any other disability for that matter the whole experience from start to finish can bring a whole host of challenges.

many disabled people and their families are finding accessibility at hospitals is a real concern, having just had my first real experience first hand though having pneumonia and a collapsed lung, I’ve never been this ill before even having Muscular Dystrophy, it didn’t take long for me to realize that when you have a disability it can bring you real challenges and lead to many more difficulties.

Accessibility of Hospitals For Disabled People

It never really crossed my mind until now and taking to many people getting their experiences to the many issues that the NHS face in regards to providing appropriate care for vulnerable/disabled people, it’s definitely opened my eyes and given my much food for thought, mostly what changes can be made?? What can be done to improve the NHS and it’s accessibility for disabled people and their careers.

Lack of knowledge

Now I’m fully aware that not all NHS staff can’t have knowledge about every disability out there that just crazy and unrealistic hence why we have specialists that cover different fields including disabilities.

I think it would be a good thing at least the basic level of training and awareness of complex needs is needed and crucial to allow NHS staff to be better equipped if need, It’s more common than it should be that disabled in-patients are being forced to go without some of their vital care needs, having to go without basic personal hygiene i.e showering due to the lack of staffing, lack of training plus equipment, in this Stan age it’s not right and really shouldn’t be happening at all, providing and improving training for staff will give a better understanding/awareness of how to manage the patients care more effectively as well as moving them they would lessen the risk of causing further discomfort and pain.

Attitudes and communication

I was fortunate enough that most of the staff I had care for me where understanding and willing for me to explain how my body works, but I did face a few that where rude spoke down to me as if I was a child and didn’t know what I was talking about, it’s not uncommon for disabled people to often experience people speaking to the person we are with and ignoring speaking directly to us, they assume we can’t think or speak for ourselves because we have disability or in a wheelchair.

I try to make myself as clear as I can but unfortunately some times I still face staff that think they know my body and disability better than I do, surprisingly most People with a disability tend to have a greater understanding of how things will affect them and what works and doesn’t work for them, now I’m not silly I know that doctors and staff are medically trained I just believe that if they were to work with us and listen it would work more efficiently on both parties, unfortunately Some disabled people are unable to communicate verbally using other forms of communication they would mean Staff would need to be aware of this and not ignore it or brush it off as it’s still a valid way of communication.

Accessible Toilets / Shower Rooms

You would think being a hospital you wouldn’t face difficulties when it came to accessible toilet unfortunately this isn’t a case you’ll find that most are un-equipped and small leaving very little space to manoeuvre, This can create difficulties that can be dangerous as a wheelchair user who needs assistance from one or two careers, it can become an even bigger challenge if you need a hoist for toileting as there is no space what so ever for this to happen, you wouldn’t think that in a hospital the layout of accessible toilets would be so bad but this isn’t just in hospitals, most people take for granted but for some of us its the thing of nightmares.

Open access

You’ll find most Disabled people have a family member, career or a PA (personal assistant) that are with them everyday to give them that extra support, most Disabled people I’ve spoken to feel that they wouldn’t have had the essential care and support from the hospital staff that they needed day-to-day, I was lucky enough that my recent hospital stay the staff where pretty good in checking in regularly with me when my husband wasn’t with me, I did have the odd occasion where my dinner was cold because staffing was low, having muscle weakness in my arms I’m unable to lift my arms to grab food or drink myself.

I find myself concerned though after speaking to several disabled People in similar situation to me, that their stay in hospital was worrying for them as nurses rarely check in, the worry of medication being given on time, it’s not down to the fault of the nurses or HCA it’s down to short-staffing, to take that added pressure of them and have more resources for staff to help patients with disabilities and complex needs then there needs to be more provisions in place for careers, PA’s, family or friends to stay in the hospital with them, its down to the simplest of things to make it earlier for carers or PA’s to stay overnight like a z-bed and a comfortable chair as most often it’s the carers, PA’s and family doing more work than Hospital staff when their in hospital.

Equipment and Aids

When you think of hospitals your first thought should be high-tech and lifesaving equipment well mine does, we are pretty lucky to have the NHS it has some amazing Equipment that do some incredible things, with that your thinking would be Hospitals would have the best easy access for disabled people, wouldn’t you!? Unfortunately that’s not the case at all, in fact hospitals are inaccessible in so many different ways, lack of equipment such as hoists is just one of the reasons why some disabled people feel hospitals aren’t disability friendly.

Hoist are the only way to safely help a Disabled person unable to stand or be manually lifted themselves without causing unnecessary injuries, being moved manually can cause unnecessary stress and discomfort, this can leave some disabled people having to go without the medical treatment they require,

To finish

It’s the smallest and simplest of things that can help improve the accessibility of hospitals for disabled people and their careers, having access to vital equipment to hand to help I.e a hoist available to every ward, having someone they know stay with them at all times, quick fact sheets on the different disabilities for them to understand a small amount about the Disabled person, these small and inexpensive changes would make the world of difference to most Disabled people.

Whats are your thoughts on the NHS??

Are you disabled and had a bad experience when in hospital send me a message with your experience/s

 

Kerry x

Changing places – Guest post with Jen & Handsome Riley

Are you a parent?! Can you Imagine changing your baby/toddler on a public toilet floor that hosts hundreds of germs! Is your answer ‘hell no, that’s why there is baby changing areas available’.

What about a Disabled child or adult why is it classed as acceptable to use a dirty toilet floor or not be able to use a toliet at all?!

If you’ve read my blogs before you’ll know I’ve talk about the changing places campaign to bring awareness to the lack of places for Disabled children and adult to be changed or go to the toilet, but this blog isn’t about me I want to share a story of a beautiful little boy called Riley and his mummy Jen my friend and the challenges faces have a Disabled child being denied the basic human right to have a safe, clean place to go to the loo;

This is Jen and Riley’s story 

Hi my name is Jen, I’m a 34yr old Mum/Carer to my gorgeous little 3yr old boy Riley, I also have my big boy Archie who’s 6.IMG_1276

Riley unfortunately has an undiagnosed neurological condition, he faces many medical issues everyday He has severe epilepsy and global development delay, Riley is non verbal and is fed via PEG due to an unsafe swallow, Riley has very low muscle tone and is unable to hold objects or weight bear, even with everything he faces day-to-day this has never stopped him from giving us one of he’s big beautiful smiles.

Although Riley is only 3yrs old he is very tall for his age which means I’ve unfortunately experienced many challenges trying to change him whilst out and about, especially since he’s now grown to big to use the baby changing tables that are available.

Before having Riley I assumed that all disabled toilets catered for everything that all disabled people would need – how wrong was I!!!! Yes it’s fantastic to have a higher toilet with rail guards and some extra space in the room but what about people who can’t use a toilet?! What about people that need to be hoisted?!

To plan a day out as a family really takes some careful planning and organising, my family live 2.5hrs up the motorway this was an issue to begin with, until I found out some of the service stations on the route which have a changing places facility (or similar!) they are an absolute god send for our journey now.

why should I have to change my little boy on a dirty toilet floor, it’s completely disgraceful that these facilities aren’t available EVERYWHERE shopping centres, pubs, restaurants, supermarkets etc.

If changing places toilets were more widely available it really would make a huge difference to our lives, especially when it comes to making memories as a family – there’s so many theme parks, castles, national parks etc that we simply can not visit unless we are prepared to lie our baby boy on a toilet floor to change him. Why should Riley have to miss out on so many amazing places.

Jen & Riley x


What is a Changing Places toilet? 

Each registered Changes Places toilet includes:

  • Tracking hoist system or mobile hoist
  • Height adjustable adult size changing bench
  • Centrally placed toilet with plenty of room either side
  • Screen or curtain for privacy
  • Adequate space for a disabled person and at least two careers
  • Non Slip floor
  • Large waste bin for disposable pads
  • Wide tear off paper roll to cover the changing bench

To support and raise awareness of the need for Changing Places toilets, Muscular Dystrophy UK established the #FitToBurst campaign, over 250,000 Disabled people in the UK need a changing places or space to change toilet, that 1 in every 260 adult or child.

Keep up to date on Twitter @cp_consortium with access to a map of where all registered changing places toilets

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Go have a read of some real life stories including my own at http://www.changing-places.org/real_life_stories.aspx

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As a changing places user myself I wrote about my experience. Tell me what does it mean to you to have more Changing Places toilet??

Kerry x

Thank you

Thank you for the sacrifices you make, thank you for the things you do even when I know you don’t want to, thank you for being my rock when times are hard, thank you for being my best friend, thank you for sometimes being the voice of reason, thank you for the laughter you give me, thank you for the silly version of you only I get to see.

12 years ago when you met me I told you there was a strong possibility I would end up in a wheelchair unable to care for myself this didn’t make you run away you stayed, you stayed when it got tough even when you had the choice to go, you stepped up when no one asked you to.

Thank you for your quirky ways from your OCD way of hanging the washing out, your obsession with naming ever electrical item in the house that can be named.

Dave, Dave’s brother Steve and Dave’s brother John!!

Thank you for every argument we’ve had and are going to have it makes us stronger, thank you for keeping our relationship entertaining from being a fully grown man-child to the brat that needs everything it sees.

Thank you for being my carer and not letting anyone else care for me because you feel your letting me down, thank you for always supporting me no matter how crazy you think I am.

Thank you for the memories we’ve shared and future memories we’re going to share, thank you for telling me you love me every day, thank you for our little saying as you walk out the door and when we go to sleep.

I’ve never asked you to move in you’ve never ask me to marry you so how we ended up living together and married is a mystery?!

Our relationship is far from perfect but it’s ours.

Thank you for just being you

Dedicated To my husband ❤️

I’ve never been this ill before even with having Muscular Dystrophy

It’s now been over a month since I came out of Milton Keynes university hospital after spending 3 weeks In their care, it’s been a struggle adapting back into home life, finding the energy to be stood up and being put into my chair has been hard work let alone getting washed and dressed I was ready for siesta!! But I’m jumping to the end of my recovery.

So sit back get comfy and I’ll paint you a little picture as this maybe a long one…Sorry!!

How did I end up so ill

It’s that time of year cold, wet and depressing – yep January!! but then most of the year is like that, everyone was coming down with that cold that was floating around everywhere including hubby, for some reason when ever my husband gets a cold I never catch from him it’s always someone else that generously passes it on and that’s just what happened on this occasion, feeling my nose running away from me and knowing we had a family wedding to go to the following weekend I was determined not to be full of cold snotting on everyone, so I doubled up on my Aloe Vera in the bid to get rid as quickly as I could but I started feeling it on my chest, knowing that it could quickly turn into a chest infection so on the 22nd January I gave my GP surgery a call asking to talk to a doctor that same day.

‘Now I don’t know how everyone else’s GP practices work, but I don’t have just one doctor that I see plus it’s near impossible to get an appointment without knowing you’re going to be sick 3 weeks before your sick’

Having Muscular Dystrophy it can affect different parts of your body, respiratory just being one so coughing for me is very hard I always sound like im faking it, hubby’s always joking with me saying is that it you can do a better than that – surely!!

Waiting for a call back from the doctor always feels like forever when you’re not feeling great, thinking after an hour ok there not calling anytime soon so I have time to nip to the toilet ‘nope’ never learn as soon as your bum hits that toilet seat you hear ‘ring ring’ total eye rolling moment, missing the first call I called back, time to get comfy and wait for the doctor to call again this time I’m not moving no matter what!!

Call back

Speaking with the doctor I told him how I was feeling and that I could feel it hitting my chest explaining that my body doesn’t work the same way as everyone else’s plus past years experience of chest infections I’d need 10 days worth of strong antibiotics, the prescription I got 7 days of amoxicillin, nothing new doctors not listening and their lack of understanding a disability because you’re not their permanent patient. So Just getting on with it like I normally do in the hope that I got it quickly enough that 7 days of antibiotics would be fine.

A week later

Family Wedding over Antibiotics finished the lack of sleep from coughing so much over the weekend was now taking it toll, my lungs where hurting from the coughing so I gave my GP surgery another call Monday morning (5th Feb) to be told sorry the call list is full we don’t have any appointments left either, I tried everyday unable to get anything even explaining that I had Muscular Dystrophy, then finally on the 9th Feb explaining once again to the receptionist why I couldn’t make it into the surgery I was added to the duty doctors call list, the call came around 7pm the doctor wanted to come out to me as I had Muscular Dystrophy, 10 minutes later the doctor knocked on my door, explaining that my lungs hurt so much from coughing because I’m struggling to cough up what’s on my chest plus I’m physically tired from not sleeping, he listened to my chest and said ok you have pleurisy that’s why your feeling the pain in your lungs I’ll give you something to help the pain as well as something for the pleurisy, I remember feeling as if the doctor hadn’t listened to a word I was saying not wanting to undermined what he was saying but also needing to double-check for my own piece of mind, so the chest infection has gone!? ‘yes’ ok just in case can I have more antibiotics just to make sure please ‘no, no more antibiotics’ I’ll give you a prescription to help the pain and the pleurisy. Trusting what the doctor was telling me he wrote out the prescription and went on his merry way.

Hubby being at work and just wanting to get what ever the doctor was giving me down my throat, it’s a good job hubby has some amazing friends that went and found an open pharmacy after 8pm. The prescription the doctor had given me was cough medicine and strong ibuprofen.

persevering though the weekend also getting advice from my mum plus trusting the doctor also, still coughing and having my husband whack my back over the bathroom sink just to get the gunk off my chest, it just wasn’t moving I wasn’t getting any better if anything I was worse I’d now been ill nearly 3 weeks, I called the GP surgery again on Monday the 12th February begging for stronger antibiotics which I finally got with the doctor telling me I can hear you still have a chest infection (so how did the other doctor miss this a few days before!).

24 hours later

After yet another sleepless night, crying sat on the loo so physically, emotionally tired not able to breathe properly I said to my husband I think it’s time to call the paramedics, my husband said your tired baby you need to let the new antibiotics start working and really what can the paramedics do!? saying I don’t know I just know something isn’t right, plus he knows I have a thing about anyone wasting the emergency services time for nothing when there are people that need it more than me (crazy I know, when you read this it turns out I was the one in need)

So I said ok I’ll call 111 and get some advice from them, not being much use than to tell me to call my GP again so that’s just what I did crying down the phone telling the receptionist how I was feeling how long I’d been feeling this way and what 111 had just said she said I’ll get the doctor to call you as an emergency.

Waiting for the call back my mother in law called asking how I was I told her I’m physically and mentally exhausted, plus what 111 and the receptionist at the doctors had said she then said I’m on my way to you now, she doesn’t live that far away but also doesn’t own a sports car she definitely made it in quick time I can tell you! she wasted no time calling the doctors to find out how long they were going be as she could see something wasn’t right, the receptionist said a few hours yet (different to what I was told) and followed with you need to call 999 if Kerry is struggling.

I can hear you all saying so where’s hubby as this is all going on he was with his second wife ‘the man shed’ outside having his coffee, now my husband has never been great when it comes to a crisis with me he shuts down and can’t really get his head around what I’m saying, in his head he wants to believe everything is ok and I’m just being over dramatic but then I’ve never been this ill and really what loved one ever wants to admit how serious it is.

My mother in law had now taken control and called 999 (in all fairness she probably saved my life without knowing she had at that time) Fast response was obviously quick to show up, unfortunately having to explain my background can sometimes take time not everyone understands muscular dystrophy, I have got a message in a bottle that’s in my fridge and a sheet with blood work and oxygen levels from Churchill hospital in Oxford they came in handy, but when you’re not feeling great trying to explain everything to the paramedics and guide your husband to where everything is can sometimes be tiring in itself, my sats were taken my breathing was monitored, the paramedic gave me a choice whether to go in or not but advised it was probably best she was going to try get me straight in and linked to intravenous antibiotics but needed my doctor to arrange it directly but the GP doctor said no he wants me to go straight to A&E so an ambulance was called I was going in.

What happened the next few days is very hazy in parts3609A5C2-EB57-4679-B861-327A43E9EED6

When I arrive at A&E there was no bays available so I was in the corridor for around 10 minutes then when one became available I was swiftly moved and put on oxygen, now like I said bits are still very hazy I know I was seen by a doctor and a nurse as she took my bloods plus fitted a cannula, I also had blood gases taken from someone else now I remember that as I hurt I’d never had it done before so I didn’t know it was taken from your artery in your wrist, in what order all of that happen I couldn’t tell you, I was eventually moved from A&E’s main ward to a small side ward with only a few bays just off A&E as I needed monitoring more closely because my temperature was high and my sats weren’t great.

Late that night the same day Tuesday 13th February I was moved to ward 1 I was hooked up to a monitor, drip plus I had a paracetamol drip as my temperature was still quite high, I was kept on oxygen and given a nebulizer, more blood gases were taken and I was put on hourly obs, at this point I was still being treated for a chest infection, I still again don’t really remember much of what happened that night or the following day for that matter as I was still not sleeping from the coughing so by this time I was so physically drained I could barely function, I know my temperature at one point went dangerously high at 49 and I remember my cousin coming to visit and being seen by the physio several times with the cough assist machine (this was my first experience of this machine) to try clear some of the gunk on my chest unfortunately the cough assist machine wasn’t working for me at that point so the physio was having to use both hands and push just under my rib cage every time I coughed it’s wasn’t Pleasant and yes it hurt but it was working to clear small amounts, then later that night Wednesday 14th i was taken to a ward but as quickly as I had arrived i remember a doctor saying to my husband I wasn’t staying on that ward so I was on the move again to a different ward one that deals with respiratory.

The following morning 15th February the ward doctor and his team came around to tell me ‘your in a serious condition you have pneumonia it’s taken hold of both your lungs’ were going to keep you on oxygen give you two different intravenous antibiotics, we’ll keep you on the drip and paracetamol drip when you need it as your temperature is still high and get the physios to come and see you 4 times a day, you’ll be on hourly obs until further notice.

They where having issues taking blood plus my cannula in my arm was also hurting the tube into my arm was bent from it having extra tape put on so every time it was being used it was hurting, two of the ward doctors tried getting a new one in my right arm after 3 attempt of what I can only describe as digging around inside my arm to find a vain I had to ask them to stop and told them find another way, a few hours later an anaesthetist turned up with scanning equipment to find a suitable vain to, him not wanting to be defeated by my body and my vains not wanting to play ball I was used as a human pin cushion again digging around trying to get the needle into the vain until I told him his 5th go was the last if it didn’t go in this time you’ll again need to find another way, it’s a good job it went in!

We had reached Friday 16th February I’d now been ill 19 days and in hospital for 4, my body was struggling to fight back I was struggling to fight back, so the doctor sent me for chest x-ray, CT scan he also asked for an ECG as my heart looked like it was struggling also.

Monday 19th February the doctor told me my left lung had collapsed, it’s more than likely it collapsed at home scary thought when the doctor tells you one of lung has collapsed but to also tell you if I’d of left it any longer  than I did to call 999 there’s a strong possibility my other lung would have collapsed and my situation would have been more critical than it was im very lucky to have gone in when I  did my heart sank, I had no one with me when I was told I’ve never felt so alone until that moment, I’ve never thought of dying before now my health has never really been a problem before now I’ve never been this ill before I’ve always classed myself one of the lucky ones having Muscular Dystrophy and never really having any serious health issue as others that have muscular dystrophy do

He followed with we’re going to send you for a procedure called a Bronchoscopy to try Reinflate your lung again we’ve sneaked you in this Wednesday (21st Feb) were also going to fit you with a picc line to make taking bloods and giving antibiotics easier plus another CT scan.

I held my tears until the doctor and his team left me, pulling myself together as I had to break the news to everyone including hubby who wasn’t coping as it was (trying to convince people he was fine) me being in hospital and as serious as it was plus this was the longest time we’ve ever been apart in 12 years.

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powerwand

A few hours later I was taken for a CT scan and to have a picc line fitted into my arm, I was wheeled in my bed into a sterilised room where I was greeted by a nurse and her team where she told me there was a change of plan she’d spoken to one of my doctors I was no longer having a picc line fitted I was now having a powerwand instead very similar but slightly different, I was slid onto bed my right arm was stretched out so it was straight the nurse then scanned and marked where she was going to fit the new line also explaining to me I won’t feel anything as I’ll be having local anaesthetic, inside the top right arm marked and covered in iodine I was then covered with a sterilise blue sheet that had a hole where she needed to fit the powerwand, the nurse was then gowned up after scrubbing in put her mask and safety glasses on and 10 minutes later I had a new line fitted that I could keep in for 28 days, then wheeled back out to the corridor for a short wait for my CT scan.

Wednesday 21st February procedure day CANCELLED – I had to wait until Monday 26th Feb I was to keep seeing the physios everyday 3 times a day the cough assist machine and I was now working together – I was now one with the machine!! (as my mum told me to be) 3/4 deep of breath then as i coughed the machine was suck the air out of my lungs, not that’s pleasant as your hacking up gunk that doesn’t look great in colour or taste very nice.

Monday 26th February official procedure day it was an early 6.30am wake up as I was on nil by mouth from 7am I waited all day watching people be taken as I wasn’t the only one having the procedure on my ward, my time finally came just gone 4pm to say I was scared was an understatement but holding it in as hubby was with me, I was moved onto an operating bed where I was wheeled to apart of the hospital I didn’t know existed it was rather posh, we went down a long corridor that was warmer than the rest of the hospital into elevator to enter a ward that only bedrooms nothing else, hubby had to leave me at this point and waited in the waiting room for me to finish, I was taken to a small waiting bay area where a nurse checked me in, the wait seemed ages but I’m sure it wasn’t that long and my head was just making it seem forever, I was taken into a theatre room where I was greeted by my doctor from the ward and several nurses, the doctor said your rather smiley for what’s about to happen I answered I’m smiling though my nerves have to put my drama GCSE to use at some point in my life he laughed,

The procedure was then explained I would be sedated plus 3 squirts of a numbing spray for the back of my throat, my mouth was held open by this blue thing, the camera would then be put down my throat into both my lungs, both lungs would be washed out but mostly concentrating on my left lung that little bit more as this was the collapsed one with the hope it would re inflate itself after being cleaned out

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After my procedure

I NEVER want to go anything so horrendous again apparently I cried through the whole procedure I had to be given extra sedation as I wasn’t coping, it truly felt like I was being tortured I can now say I know how it feels to think your drowning feeling your lungs being filled with water not able to do anything because you can’t move your own body is scary – procedure over struggling to breath, sats low I was put on oxygen and a nurse sat with me as I was coughing up what was left on my lungs, throat in so much pain unable to talk or swallow properly, still very dazed at what was going on around me, my ward nurse was told to take me back to the ward and put back on hourly obs.

Tuesday 27th February doctors rounds I was slightly anxious to what he was going to tell me fingers crossed, the procedure had worked my lung had reinflated itself (thank God I wasn’t going though that again) he said as long as my sats kept improving over the next few day I would be able to go home as long as I followed strict guidelines some good news finally

Wednesday 28th February I can go home the doctor and physios where happy as long as everything was put into place

  • Medication
  • Appointment to get my own cough assist machine with Churchill hospital Oxford
  • Extra help arranged with social services
  • Home physio team arranged
  • At least 8 weeks home rest

Ambulance transport was arranged for 6.30pm time was ticking over and over we’d now gone past the pick up time then the bad news came, it’s been cancelled no reason just sorry looks like your not going home tonight did I cry yes I was so excited to go home I was crushed.

Thursday 1st march the Beast from the East was upon us the snow wasn’t stopping, my fingers crossed hoping the ambulance transport wasn’t going to cancel on me again 12pm dressed and ready to go they had arrived woo hoo I was going home the ambulance lady joked and said the Whitney Houston I have nothing was now my going home song!!

You’d think this would be the end of my story but no I was very nearly taken back to the hospital because we couldn’t get hold or find my husband I called before I left the hospital then in the ambulance thinking he’s probably in his ‘man shed’ so by the time we arrived he’d be in back in the house, 30 minutes the ambulance people where knocking and ringing our door, one of the ambulance people said no one is in sorry we have to take you back Kerry, I begged for them to try one last time so they banged on our bedroom window finally we had life a sleepy faced hubby opened the door he was so excited that I was coming home he couldn’t sleep the night before so got up at silly o’clock then fell asleep in the living room!!

I’m now near the end of my recovery there is slight permanent damage to my lungs but as long as I do the cough assist machine everyday twice daily and take the carbocisteine tablets 3 times daily plus back up antibiotics at home this should all help keep me out of hospital, I now also have a permanent GP doctor so no more different GP doctors every time I call

I would like to thank the Paramedics, Doctor’s, Nurses and HCA (health care Assistant’s) for all your hard work you saved my life there is no doubt about that your all truly amazing.

I can’t wait to feel the sunshine on my face and take a big deep breath in and smell the fresh air!! 

Kerry x

From swollen feet to sexy feet ~ Lymphoedema

I don’t know any girl that doesn’t get over excited and fall in love with a pretty pair of shoes, I know I’m one.

2014-07-18 19.31.00Up until 2 and half years ago pretty shoes where our of my reach and just there for me to admire wishing I could wear, both my feet where swollen and generally a lovely shade of purple my right was the worst out of the two. ‘why’ I wasn’t really sure at the time what was causing it, I haven’t always had swollen feet wasn’t until the ability to walk came to a stand still you could say ‘literally’ as standing is all a can do these days, it wasn’t really a problem for a few years but they gradually got worse as time went on I did yes ignore it and added it to my list of just get on with it.

It didn’t matter how many times I looked for that pretty pair of shoes hoping I’d find just that one pair I could wear It was just never going to happen I couldn’t find any that would ever fit my right foot not even a trainer and it’s not as if you can walk in to a shoe shop and say hi I’d like to buy one left shoe in that one please!!

my feet where always so cold and dry, it became very hard to stand for more than a few minutes as the pain was sometimes unbearable so standing started was now becoming very hard, I did however have one trustee pair of shoes (black leather ballerina type shoe) I would wear all year round not the best in the rain, I’d get home with very wet wrinkly feet as if I’d been in the bath for hours with the added bonus of a puddle at the bottom of my shoes, winter was probably the worst time to wear these shoes my feet where already very cold so you can imagine how cold they where after a trip out, even having a blanket covering my legs and feet didn’t quite shelter my feet from the cold winter elements, trying to warm them up that could take hours and sometimes just wasn’t happening until I was in bed with my heat blanket on (I love my heat blanket)

I suffered like this for year’s it got so unbearable it was just time to not just suck it up now and to do something about it, so I made an appointment with my doctors, after talking to the doctor that was available at the time he wanted to do a few test to see if there was anything that could be done, so the normal blood pressure check and a new one I’d never had before its like a mini ultrasound on my feet to find my heartbeat.

After few months of not hearing anything back I called my doctor’s surgery to be told the doctor had left, back to square one I was of just living with it, until my cousin Kristi mentioned looking into a lymphoedema clinic at Willen Hospice in Milton Keynes, I thought ok worth a look I guess so off to ask my good friend Google.

After I’d done all my research I thought time to call my doctor’s surgery again, speaking to another doctor explaining that I’d already seen a doctor and had tests done but he’d left and nothing had come of it, he looked into my past results and said well there’s nothing we can do it’s just one of those things ‘ok’ can I get a second opinion and a referral to the lymphoedema clinic at Willen Hospice please, the answer I got back was no we can’t do that and don’t think they can help you disheartened still with swollen purple painful feet I went home,

I’ve spoken about my amazing Anna Kent Neurological conditions clinicalspecialist in a past blog, over the years Anna has been my saviour in more ways than one, we was having our general catch up and I happen to mention my feet, the doctor’s appointment that went swimmingly well, then in her wonderfulness Anna said don’t worry I’ll refer you to the lymphoedema clinic (I’ve come to the conclusion everyone needs an Anna Kent in their life).

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meet Kate

When my appointment came I was a little apprehensive but excited to see if I could get help finally, it was a home visit which was great definitely makes you feel that little bit more at ease, then in came a wonderful lady called Kate in her blue nurses uniform with a colleague, I was pre told in my letter that my first appointment I’d need to be laying flat other than throwing myself on the floor which was clearly not a great idea to lay down the only other option was my bed.

We went through a check list of questions to being with your normal ones how old, disability it was a relaxed getting to know each other that’s how it felt, Kate did the same checks as the doctor did way back when but then pulled out a tape measure, little ruler and a washable pen started making little lines about 3 inches apart starting from my feet and ending just above my knee after all the test were finished kate talking/showing me everything and how my lymph notes weren’t working instead of draining fluid it was storing it, my first question was of course can you help is the treatable, kate answer was yes most definitely at that moment kate became my shining angel I finally had not only diagnosis but treatment as well. 270B5D41-F12E-41A7-A071-CFE4FBD9F10B

Treatment

  • Wearing Compression socks everyday
  • Keeping my feet and legs moisturised
  • 6 monthly check ups at home

Here some information – What is lymphedema

Lymphoedema is a swelling of the body that develops as a result of fluid build up without normal lymph drainage affecting your arms or legs, this may be as a result of the lymphatic system not developing properly or through damage or trauma It can also affect any part of the body but is most commonly seen in arms or legs, a recent study has estimated that at least 240,000 people in the UK may be affected by this condition.

If your reading this and thinking this is me get checked and don’t take ‘nothing can be done’.

Kerry x

A wheelchair night at Chicheley Hall

There’s something exciting about packing a little suitcase for a night away somewhere new, so when the opportunity to spend the night at Chicheley Hall thanks to a family wedding my little suitcase was packed in my head ready to go.

I’ve always said that great Britain has to offer most beautiful places and countryside to see this was truly one of them, an 18th Century grade l listed country house you can see why it’s been featured in films like Pride and Prejudice.

We arrived early Saturday afternoon and was greeted by the huge, stunning grounds. It was truly picturesque with the long gravel drive, coated by trees leading all the way up to the huge mansion, Downton Abbey kind of vibe!
you can just see the history pouring out brick by brick imagining the people who used to live there and what their lives must have been like, it’s definitely the perfect location for a wedding.6763ef93-4055-4787-9df8-dfe062378faa

Being in a wheelchair I was a little dubious to whether I would be able to really enjoy what Chicheley Hall had to offer, pleasantly surprised as you pull into the car pack at the front you have around 5 Wheelchair packing spaces all clearly signed and reserved for Wheelchair vehicles, there are two entrances one at the side then a door facing the car park with a little ramp (it’s a bit of a bump in and out so if you have a tendency to go forward it’s a good idea to have someone hold your head) though the door you come to a larger quite steep ramp but it’s not as bad as it looks, As you get to the top the reception is on your right, just looking around you can start to see the history that chicheley Hall has.

Our room was already pre booked as part of the wedding we was attending it was booked as a disabled room, to get to our room we had to come back outside it was raining at the time and we was offered an umbrella which I thought was a nice touch don’t often get service like that, following the pathway down the right side of the house until we came to a big green wooden door reminded me of the secret garden, going through you see part of the beautiful gardens chicheley Hall have to offer.CD7A070F-7666-49CF-99C3-206E0CEB5FF2

The hall is actually home to the Kavli Royal Society International Centre – scientist central and because of this, each room was named after a scientist, We had the kapitsa room named after pyotr Leonidovich kapitsa, the room itself is modern clean fresh looking with two single beds with a side-table in the middle, the wardrobe had an iron, kettle, tea and coffee bits, lighting you have two lamps very bright so no need for a ceiling light, little Tv and telephone on the desk next to the window, not a great deal of room to manoeuvre around but just enough.5CBF572C-1D65-4E08-A05C-F8E939C23449

The bathroom was a wet room with a shower chair fixed to the wall plenty of room I like the fact the shower was near the door, no fuss getting back into your Wheelchair after showering as your Wheelchair can sit in the doorway, the shower itself had shower curtains and safety bars you can drop around the shower chair, toilet easy to get to when you move the unit out the way with all your free shampoo and conditioner on, that could be easily changed if they put something on the wall to put the bathroom bits on.

The bed I will say was my only problem out of everything it was a little awkward for me, the mattresses where lovely but to soft for me, I don’t have a lot of movement so I did feel very restricted, I didn’t sleep all that well my poor husband didn’t either as I needed moving a lot though the night, the duvet was very heavy for someone who can’t move themselves very well, all these again easy to fixed with a harder mattresses topper and lighter duvet, I’m sure there are people out there that love a super soft mattresses, pillows and very cosy duvet but for someone with limited movement not so great.

Breakfast was delicious definitely filled me it was buffet Style all locally sourced, you had a range of choices from full English, fruit, cereal, toast with their own home-made honey from the grounds and a selection of jams, the staff come and ask you if you want tea or coffee then bring it to you, you also have a range if fruit juices to pick from as well, having the beautiful view while eating breakfast really does set your day to a good start, they do offer room service with a tray price of £5.D8C5009C-88F7-4125-B7A2-8859762D2DA5

it wasn’t until the following morning when we woke up we really saw the amazing view from our window and the well-kept gardens the sunshine being out made it even prettier, the grounds itself are 100 acres that includes a lake, canal, and 25 acres of beautiful gardens still kept as they were when they were designed and laid out by George London and Henry Wise. Theres an avenue of lime trees leads up to the house. The River Ouse lies to the east, unfortunately I didn’t get to see any peacocks but I did see some swans at breakfast.

You do have a large disabled toilet just though the bar area opposite the reception, it’s keep very clean enough space to manoeuvre where needed  which was great as I didn’t need to leave the wedding.

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Over all our weekend stay was lovely the staff where amazing very friendly and helpful, there was always a member of staff around, would I stay again yes I’d like to but only if the mattresses and duvet could be changed, I’d love to see the gardens in full bloom in the summer as well.

Kerry x

New found heroine – The Disabled Suffragette.

As this year marks a 100 years since women won the right to vote as I was reading about the suffragette I found a story about Rosa May Billinghurst the disabled suffragette and women’s rights activist she was known as the ‘cripple suffragette’ I found myself wanting to know more about Rosa may Billinghurst and how she campaigned in a tricycle.

So here’s her story

Rosa May Billinghurst was born in 1875 in Lewisham London, a well-educated woman from a middle-class family her father was a banker and her mother came from a family who manufactured pianos, as a child she survived polio but it left her unable to walk so wore leg-irons and used either crutches or a modified tricycle to get around, Rosa became active in social work in a Greenwich workhouse for the poor teaching in a Sunday school and joining the temperance band of hope.

She became a useful member of the Women’s Liberal Association, then in 1907 she became a member of the WSPU (Women’s Social and Political Union) Despite her disability this didn’t seem to stop her she took an active part in the WSPU’s march to the Royal Albert Hall in June 1908. Rosa also helped organise the WSPU’s response in the Haggerston by-election in July 1908.

She even founded 2 years later the Greenwich branch of the WSPU, As first secretary she took part in the ‘Black Friday’ demonstrations (Black Friday was a women’s suffrage event that occurred on 18 November 1910) Rosa was able to attend thanks to her adapted tricycle (the olden day Wheelchair)

Her first arrest – militant campaigning in 1911 for obstructing police at a demonstration in Parliament Square, Rosa was thrown out of her tricycle in a brutal manner by the police, then had her arms forced behind her back in a painful manner bending one of her fingers right back, which would have caused anyone great pain, knowing she was helpless and unable to move as the wheels on her tricycle had been let down by the police they even pocketing the valves, even in the midst of this happening she was still quite prepared to take the added publicity to benefit the suffrage cause, whilst there were reports of police violence from other suffrage supporters, her testimony is horrifying, but this arrest didn’t make it into the Home Office’s index as a suffragettes arrested.img_0953

When Rosa was in her tricycle she would place her crutches on both sides and would charge any opposition, in a witness letter to the Chief commissioner of police about Black Friday to say that the reaction of officers was justified because Rosa “again and again drove her tricycle at their ranks”.

She was arrested several more times over the next few years, the first actual mention of her in records held at The National Archives is in relation to the WSPU’s would be the window smashing campaign.

img_0952  In 1910 and 1912 Parliament considered various bills to give some women the vote, but none of them passed, In response to this the WSPU organised a window smashing campaign in March 1912 this lead to 220 arrests, Rosa was one of the arrested she smashed a window on Henrietta Street which lead to her being sentenced on 12 March to one month’s hard labour, the prison authorities were confused by this and gave her no extra work, She became Friends with many fellow prisoners including Dr Alice Stewart Ker who got rosa to smuggle a letter out to her daughter when she was released.

In 1912, Rosa was arrested and charged again with damaging letter boxes in Deptford she was sentenced to eight months in hallway prison, this is where she went on hunger strike and was forcibly force-fed rosa becoming so ill that she was released just two weeks after, even after this she it didn’t deter her to continued to support the WSPU’s leadership and carried on campaigning by chaining herself to the railings of Buckingham Palace.

It turns out Rosa may Billinghurst was not the only disabled woman to become a suffragette, Adelaide Knight was another suffragette activist with mobility issues who campaigned whilst using crutches or a stick, Adeloide Knight was a key figure in the East End women’s movement who also chained herself to the railings outside Buckingham Palace She was similarly arrested and served a prison sentence, Rosa may Billinghurst and Adeloide Knight would have had a totally differing experiences to any of the other suffrage campaigning for the right to vote, yet this didn’t hold them back one bit, I find myself in ore of both of these women they are truly inspiring examples of women who did not let their disabilities get in their way of campaigning for the right to vote in Parliamentary elections.

Rosa endured so much in her fight for women to get the vote, yet it is her experience of violent suffrage demonstrations as a disabled campaigner which remains her legacy She was branded the “cripple suffragette” by the press and her peers.

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My Loveholidays.com experience

We all love a good sunny holiday abroad so it shouldn’t be any different for anyone in a wheelchair, unfortunately holiday’s can go terribly wrong no matter how much you put your trust and faith into the travel agent/company you book with. So every now and then you find yourself in battle with a company that’s not only in the wrong but also takes no responsibility for their actions.

This is my story of a year-long battle that did unfortunately take its toll on me physically and mentally.

In June 2015 I booked what I thought was a wheelchair accessible/friendly holiday with Loveholidays, this was to turn into something that could have been avoided if loveholidays had trained staff like most other travel company have, an accessible team.

What did they do so wrong

Having muscular dystrophy with my own set of 4 wheels or as I like to call her my go-kart (powered Wheelchair). when booking a holiday abroad I go into great detail of what my needs are, plus making sure whomever is booking my holiday understands what I need.

  • Bathroom with walk in shower with fixed shower chair
  • Fully accessible hotel for wheelchair users
  • Vehicle transfer – rear loader vehicle for electric wheelchair on to – airport to hotel – hotel to airport
  • Area is accessible and as flat land as it can be I.e shop, restaurants, bars.
  • Help at airport – special assistance on & off plane
  • Traveling in my own powered Wheelchair

After spending several hours on the phone to the travel agent at loveholidays, explaining and going though my needs, I made sure the travel agent repeated and understood what I was asking for.

Still I was sent to a hotel & place that can only be described as unsafe and unfit for anyone in a wheelchair, it made me feel as if the whole phone call booking the holiday hadn’t happened, what was meant to be a wonderful all-inclusive break away with my husband for two weeks end up being the worst holiday I have ever experienced.

This is my holiday. 

It was a 3am start to Luton airport – From the moment we arrived at a rainy Palma airport that’s where our problems started, we aimlessly wandered around the airport looking like true tourists trying to find the transfer desk which we finely found after 10 minutes, we was told to take sit and wait for someone to call us when our wheelchair transfer vehicle was here, then around 15 minutes later a lady came over and asked where my husband was she need to speak him, she was adamant that she didn’t want to speak to me (that’s unfortunately not unusual when people see the Wheelchair) so I grabbed my husband who was outside to find out what was going on, as my husband wandered back from the desk with a bewildered look across his face then said they can’t take you ‘why’ they don’t deal with powered wheelchairs only fold on, ‘ok, so what are they doing we’ve paid already’ My husband followed with nothing she’s told me we need to make our own way and get reimbursed from the holiday company, they told me the taxi rank is that way.

Tired, uncomfortable and agitated I just wanting to get to the hotel, we had no way of knowing how much or how long the journey was going to take us, I was anxious and concerned we wouldn’t have enough euros. €28 later, thank goodness it wasn’t far but still not the point when we had paid for the journey already.

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The Slope

We had finally made it to the hotel it was on a busy road a few little convenience shops a take away but mostly apartments surrounded us, my heart sank as I looked at the big curb there was no way I was able to make it up without my husband pushing the back of my wheelchair to get the front wheels up into the curb, then came the ramp up to the hotel that was so tight I could barely turn my wheelchair to get onto it, it was a steep and tight slope upwards my left wheel lifted off the floor, believe you me that’s not much fun having the feeling that you have no control over your 98kg wheelchair that your strapped to with metal bars stopping you from falling over onto the pathway/road, the top was just as tight of a squeeze I was faced with the stairs right in front of me so it was a Swift turn or I ended up going down the stairs. Going down was even more dangerous the slop was that steep and Slippy my husband hand to hold on to the back of my chair, I have no brakes like a car so I would have ended up hitting the wall at the bottom, Would have made a good comedy sketch for Lou and Andy in little Britain,

We couldn’t check in as we was early our room still hadn’t been cleaned, so we put our luggage in the luggage room and went to check out the rest of the hotel, of course the pool area was the first port of call, the 2 lifts that go straight to the pool area I couldn’t even get me’ my go-kart and I into, the doors kept hitting the back of my wheelchair and my wheelchair was scrapping the sides of the lift, thankfully there was two other lifts in the hotel in the hope that I could get into them off we went, it was very tight squeeze my feet had to be pushed up against the back of the lift just to be able fit in but I made it in, with my poor husband squeezing in by the side of me nearly taking his manhood. (At times in the holiday I had to be sent in the lift on my own if we had any bags with us)

The pool area was on the 1st floor which was the only place that had a disabled toilet and that was closed down the same time the pool was at 7pm, there was a 2nd pool on the roof but again a few steps to get to it so I never did see it.

By the time we was able to check in it was 2 in the afternoon we where both tired frustrated and hungry, so we just wanted to get in our room and relax before dinner, our room was on the 4th floor which I found crazy as there where signs posted everywhere, especially by the lifts saying “if in a fire don’t use the lift”as you can guess hopping that there wasn’t going to be a fire or I was stuck for sure, there was 2 occasions when the fire alarm went off around midnight – a great safety measure when you’re in a wheelchair.

There was a small corridor to get to our room on the fourth floor with the two lifts I couldn’t get in and a flight of stairs directly opposite, going through I had to make sure my wheelchair was pushed as far as I could get up to the wall of the lifts side, as there was what I can only explain as a cut out bit of the floor that if I had misjudged I was going down the stairs.

First look at the bedroom it was ok enough Space enough room for me to manoeuvre around as long as I kept the wheelies to a minimum, the balcony had a 4inch step so I wasn’t able to go out onto that unless I was lifted backwards in my wheelchair over the step, so was unable to stay outside on the balcony on my own as I couldn’t get back in without help.

2016-10-04 10.42.17The bathroom now this is where my nightmares got a little worse it wasn’t a walk in shower with a fixed shower chair, it was just a shower with a 2inch tile lip going all the way around the shower area and a few grab rails there was no way of me being able to shower at all, I was still holding it together at this point, but the thought of not being able clean myself or wash my hair for two weeks in a hot country wasn’t filling me with much joy, I wasn’t camping out in a field for 2 week I was in a 3 star hotel, all that kept going though my head is how is this going to work im unable to stand by myself or move my own limbs, the thought that only being able to fill a sink with hot water and use a flannel to clean was degrading.

I said to my husband I need to sleep, eat then deal with the bathroom situation and get us moved to a disabled room tomorrow he agreed.

Being all-inclusive we don’t need to worry about finding anywhere to eat which suit us great normally, so we was definitely ready for 7pm when the food hall opened for dinner, what a mistake that was half the food didn’t even look edible, hungry we mustard through to find something to eat so my husband ended up having chips and a bread roll, me cold pasta and bread as we was eating we over heard a couple on the table in front talking about the food looking at the gentlemen plate he had chips and brussel sprouts, both saying they will be glad to leave tomorrow as they was sick of no choices everyday and just eating nothing but bread, chips and the odd breakfast which was much either, that just filled us with even more joy as you can imagine, when giving the food hall a closer look you could see it was full of little flies everywhere all around the food on the walls, one of air conditioning units in the ceiling was broken and leaking around the food area, buckets placed all over the floor to catch the water dripping. (Though out our two weeks we did go and see if it had improved by no such luck).

our first day was going bad to worse, so we decided to go for a walk into the town area which was a 2 minutes from the hotel, thinking it’s ok if push comes to shove we can eat out if we have to.

This was the moment tears starting falling after holding it together all day I had finally cracked, everywhere we looked had steps up or down there was no way I would be able to get in anywhere not even the McDonald’s we found, crying along the Promenade all I could say to my husband was I’m so sorry, I’m so sorry I booked this holiday and I’ve ruined our holiday.

Day 2

I had now gone from upset to mad (amazing what a good night sleep can do) in a better frame of mind I was now on a mission to get our holiday back on track, first we needed WiFi so of I went to the reception to pay and get a WiFi code, my first email was to the travel agent that booked our holiday, telling her I was less than impressed about the Wheelchair transfer and the bathroom situation these both needed sorting asap, I knew i wouldn’t get an email back straight away so we decided to try the town again and see if it was any different in the day time, there was a little glimmer of hope most of the eating places had tables outside on the pathway or over the road on the Promenade after getting breakfast down us we went back to the hotel.

I had received an email from our travel agent saying I’m sorry don’t know how this happened leave it with me, after a few emails exchanges I receive this one about the Wheelchair transfer

“I remember as I have all those stats of your chair, maybe I didn’t Stress to the transfer people that it doesn’t fold??” 

the rest of the day we exchanged a fair amount of emails, in between the back and forth e-mails I went to log a complaint at reception about the room and food, by lunchtime I received this email

“I have spoken to the supplier who has advised they have been given a disabled room however if guests would like to be shown another room which may be a little  bigger, please visit reception and the staff will be able to assist” 

2016-09-22 11.48.09(This would be this last email I would receive from my travel agent) The fact that still this company was not understanding it wasn’t the size of the room, it was the fact bathroom wasn’t a walking in with fixed shower chair, so to make a point I went to the reception and ask them to show me the bigger room, for the manager to tell me he was the person loveholidays had spoken to and informed me that he told them all other rooms in the hotel had baths so there would be know point showing me any other room in the hotel, the manager went on to ask what Is the issue with the shower area, explaining to him I need a fixed shower chair to the wall so I can safely have a shower as I can’t stand on my own or move myself, he said ok leave it with me I’ll get our maintenance man to get one for you and fix it for you, come back in a few hours and it will be sorted for you, thinking wow ok this Is great went off to tell my husband what the plan was and a few hours later we headed back to the hotel and our room as we opened the door there was a white plastic garden chair just sat there, saying out loud no they wouldn’t just give me this would they!? went to look at the bathroom and nothing no fix shower chair, they have the white plastic garden chair was my shower chair not knowing whether to laugh or cry my husband and I just looked at each other by this point my husband was now furious, my next email to the travel agent wasn’t full of congratulations on both parties for job well done, it was past 5pm so I knew I wasn’t getting anything back till the following day.

Day 3 

We had reached day 3 my wheels where in full breaking point mode enough was enough, my travel agent sent an email telling me she was out of the office (funny she never told me that yesterday) telling my cousin and sending her a picture of the plastic garden chair, she hit Twitter picture and all tagging me, loveholidays and Muscular Dystrophy uk after MDUK tweeted back to get in contact so did love holidays, again having to explain the situation to a different person in loveholidays these people were called the in resort team I explained this is not what I booked, I told them I needed to be moved and why this was there reply

“All team members are fully trained to sell holidays, unfortunately as we are a booking agent we do not have first-hand experience with all of our hotels. Prior to your travel we requested that you are provided with a disabled room and the hotel have confirmed that you have this room. Regrettably you are unhappy with this room type as it does not meet your expectations and we have passed this feedback on so we can look into these rooms in further detail”

Fully trained to sell holidays, doesn’t meet my expectations to say I was livid was an understatement so I stressed again it’s not what I asked for let alone paid for this next email I received

“We have spoken to the hotel supplier who has confirmed if you were to check out prior to 12pm tomorrow you will have £870.74 to find and put towards a new hotel. All other hotels are fully booked in your area. Therefore your options are, to up with your original accommodation, take photographic evidence of the room you are currently in and complain upon your return. Or, we can refund you £870.74 if you were to check out before 12pm tomorrow and you can try to find a hotel local”

The fact that love holidays had offered and where willing for anyone in a wheelchair to check out and find a new hotel to follow with everywhere Is fully booked is insane to me, we couldn’t even guarantee being able to get a flight home that day if we couldn’t find a new hotel, let alone have the money for new flights we were stuck neither one of us was willing to risk it, sucking it up looked like our only option, my last email to love holidays while on holiday was simply “I’d deal with you when I get home”

Following days

We counted down the days till home time having to make the best out of a bad situation and yes the only way I had a wash was filling the sink with hot water and using a flannel to say I was upset and didn’t feel degraded I would be lying, I had to suck it up as my husband was struggling everyday to hold in how angry he was so I couldn’t show it in front of him it would have made it worse, the last few days we was running low on money we already had a budget going out, it wasn’t helped by not being able or prepared to eat at the hotel in being scared that one of us could get ill, it got that bad in one occasion I had bread and butter with an apple and my husband went into town a got a couple of large pizza slices that where €2 each for dinner. We where roughly spending €40 a day on food.

To say on home day when that time came to come home we weren’t over excited I would lying.

Summary

Over the year of fighting this company for our money back they hid behind the words “were only a booking agent” in every email they sent me, they tell you your whole holiday is protected when booking but fail to tell you after you have booked that in fact your hotel isn’t protected by ABTA, and yet they add at the bottom of their emails and I quote “we would advised you to contact a third-party such as ABTA” they pass you from one person to the next, over the space of a year the offer of a refund went from 10% until reached 50% and a £150 voucher to use with them, telling them in the nicest possible way to exchange the voucher into cash as I never going to use them again, we had come to the last and final offer they was prepared to give they would change the £150 voucher and add it to the 50% refund plus the transfer refund, I had a hard decision to make take the offer or take it further I was undecided as I wanted an apology for one and for them to acknowledge that they needed to drastically change just using the words disabled room when booking isn’t good enough, my husband wanted me to take it straight away as it had affected my health and he just wanted it over with for my sake, I did take my time to give them my answer and looked at my other options at the same time, I also sent the CEO Alex Francis a recorded delivery 4 page letter about my holiday as I thought he would want to know how his staff where treating people I never received a response, I made the decision to end it but on the understanding that I got an email with an apology plus they took responsibility for their part. I’m still waiting to this day for that email.

I don’t think this company will ever take full responsibility for their part, not one of loveholidays staff had any intention of helping me while I was in a foreign country, the fact that one of the e-mails States “we don’t even check the hotels before hand”  and being told to put up with what we had, my safety meant absolutely nothing to this company, the feeling of being degraded as a human being will never leave me, they actually made me feel like I was a disabled person no one should be put in the same situation as I was but I know I’m not the only one out there.

I hope my story helps just one person to keep fighting even if you think there’s no hope of getting anything back keep pushing no matter what, even in my darkest moments with this company over the year getting the same answers over and over I wasn’t going to give up they needed to know that you can’t treat anyone with any disability they way they have.

Why has it taken me so long to share my story, for me this holiday is still very emotionally raw just writing it all this down again still bring me tears, plus just because I’ve had a part refund should I not tell my story of a company that treats people/customers the way they do with lies, deceit and such disregard Just to line one man pocket’s the CEO Alex Frances.

Kerry x