Patient Transport, Frustrations and Cancellations.

I don't know about you but I need to psych myself up for certain appointments and procedures. Today was one of those days. I was due to have an arthrogram of my hip (where they guide the mother of all needles into the joint space guided by x-ray to inject dye) followed by an MRI of my hip and lumbar/sacral spine. The needle bit doesn't really bother me. I've got used to being a pin cushion over the years. It's the giant polo mint, louder than an industrial tumble drier, that's the problem. Laying on my back is incredibly painful and I end up being stuck like a tortoise rocking side to side on its shell with relentless stabbing muscle spasms. Fun eh?

I use patient transport. Its not ideal as journeys can be long as the drivers pick up a number of patients to take them to the hospital for their appointments. Usually, priority is given to transport patients as they could be late due to delays on the roads. Today I psyched myself up for the long journey to the specialist orthopaedic hospital by ambulance. My patch that delivers slow release pain relief is removed as they can't be worn in the giant polo which means my pain levels are increasing like the raising tide. The time that the ambulance is due comes and goes. A call to the booking line informs me that there is traffic but they are on the way and they will call the hospital to explain.

Eventually the ambulance arrives leaving 40 minutes to get all the way round the glorious M25 (you and I both know that it would take a minor miracle to make my appointment) Before I am wheeled on board I use the initiative to ask if my procedure is actually going to go ahead as we don't stand a hope in the proverbial hot place of getting there on time. Yep! You've guessed it, the appointment is cancelled. This is actually the second time this appointment has been cancelled....the first time because of staffing issues at the hospital and this time because transport are unable to transport.

A bit of digging and me losing my cool with tears stinging my face, I find that the first crew were assigned in the morning but had mechanical issues, a second crew were assigned but I have no idea why they couldn't make it, the third crew were dispatched from Stanmore at 1:15pm when I was supposed to be picked up at 1.30pm. Even if Superman were driving he would have had great difficulty in doing the usual 1 hour drive in 15 minutes. When I spoke to x-ray the appointments lady spoke to me in the most condescending tone implying that I was less than intelligent. I've actually had this procedure done before so I pretty much know the running order. I was so frustrated and upset that I ended up hanging up the phone call when they said that they would call Monday with an appointment but couldn't guarantee I wouldn't have an other 5-6 week wait.

I compose myself, put my big girl pants on and try and call the switchboard number to try and speak to PALS (patient advice and liaison service) to try and work out a way forward. The call just rang out. At my wits end I resorted to social media and a tweet to the hospital meant a response in minutes. Why is it that you get absolutely nowhere until you use a public platform? My lengthy complaint is now in the hands of PALs although they can't guarantee I won't have another 5-6 week wait (will bring the length of time to 4 months wait for an arthrogram and MRI) They will be contacting me on Monday morning before I head off to Westminster for a Parliamentary Reception to talk about my experiences of living with arthritis and the challenges I face......ironic.

I'm now have the cast of Stomp rehearsing in my head and a whole set of joint screaming in pain. Time for a blankie fort, cuppa and snuggles.

A Summer with Arthur

As the summer holidays are drawing to a close I've taken time to reflect on how the holidays have been and how Arthur has impacted what we do as a family. 

I would like to say that the pest that lives in my body which goes by the name Arthur  (or rheumatoid arthritis psoriatic arthritis oosteoarthritis to be precise ) has not had any impact on family life but I would be lying. 

To be honest, there have been some horrendously painful days, days spent in a fog of fatigue and pain relief, days of subluxing joints, days with nausea, days spent at hospital appointments and days wondering where bruises have come from and why does having fun result in days of pain and rest. 

There have also been some fantastic days spent with family and wonderful friends. The purple chariot has taken me on some fantastic but challenging adventures. The first one was a trip to the London Acquarium. London underground is not fully accessible so careful  planning and consideration needs to be made. Unfortunately our day was not a fun as it should be because of the attitude caused by lack of training and awareness by one member of the aquariums staff. One member of our group is autistic and the aquarium poses various challenges for anyone but more so for our 4 year old friend. To be accosted for sitting down out of the way so he can have a drink and a minute to find his barings before walking through a crowded tunnel was not fun. To be accused of picnicking and the member of staff not to listen is not fun. Not all disabilities are visible. 

While wheeling round the aquarium looking at the fishes and enjoying the day one woman actually stepped over me to get to a tank and someone else physically moved me out of the way.  They pushed my chair! ! I mean what the actual hens teeth is all that about?  Talk about making me feel 1) invisible and 2) a second class citizen. Needless to say I commented rather loudly much to the amusement of my 10 year old. 

There have been some great trips.  One was to the Natural History Museum and the V&A.  The staff were fantastic and made the day easier by explaining where lift access is and inviting us to skip the long queue to enter the museum.  

I also have a wonderful powerchair which has enabled me to go on family walks to the park, into town for a coffee and wheel along the pavement holding my hubby's or my children's hands.  My new independence was made possible by some amazing friends and their fundraising. The ability to be able to go somewhere without the risk of falling or having to go home due to pain is very liberating.  

Most people expect someone with arthritis to be older.  Well I am getting older.  This summer I celebrated my 37th birthday making my time with Arthur at least 25 years.  At the beginning of the holidays myself and my family recorded a short film for Arthritis Research UK as part of their new campaign about how arthritis can be an invisible illness.  We were honoured to be part of the film and hope it raises much needed awareness. You can watch the film  by clicking the link 

https://youtu.be/bWS6cvxF280

This summer has been a mixed bag but one that I hope we have been  able to make good and happy memories with our children