Cycle 5, more appointments and a rant about parking costs

[Wellsie]

Whilst waiting for blood tests last Friday, I worked out that I am spending >£65/month on parking at UHCW, my free NHS hospital. And then about £30/month in the shop on chemo reading materials and drinks/water. The hospital provide free parking to Oncology chemotherapy patients, but not Rheumatology apparently. ??? Either way, i am constantly reminded I should not drive after my infusion. Helpful. Rergardless of the costs and the constant blunders of the day case unit with my chemo treatment, I have been impressed with the efforts and attention from senior medical personnel, doctors and consultants since diagnosis at UHCW, and it remains worthwhile every 80 mile round trip I make. My local hospital in comparison just could not provide the same skill or expertise (which I learnt during my last admission). I no longer feel like a moaning hyperchondriach wasting valuable time, although...

So had cycle 5 yesterday. No mistakes at all yesterday, but funnily I was the only patient on the day care ward. So for the 5 hours I was there I had the full service of a ward sister, staff nurse and health care assistant. I was made team from a kettle in a proper staff mug, shown all my blood and test results on screen and had some VIP time from sister (happily not the one that pierced my still numb and painful radial nerve in cycle 1). But for 5 hours I have never seen 3 members of staff look quite so bored; they even read my paper! Due to drug and patient protocols, none of them were allowed back to the in patient ward until I had left. Terribly wasteful and shocking waste of time and effort; when did the NHS lose all its common sense?

Had some good news too; last chemo cycle showed a shocking amount of leukocytes in my urine, but the subsequent urinalysis revealed no sign of infection and only a trace of red and white cells. I had 2 aorta CT angiograms last week; the radiologist wanted to run a second as he was confused by what the first told him. i asked him if he'd seen a patient with PAN before; clearly not! The second scan is still being reported, but I was told it was run as they had discoverd "nodules" (aneuryisms) on some of the organ blood supplied, and wanted to identify if they were active or remission. Yesterday's urine tests were marginal for leukocytes and protein, although my urine is still strong smelling and foamy. One for the urologist.

Next week I'm back to UHCW 3 times...an appointment with my rheumotologist to despite therapy progress (sister thinks they will want to add another 6 cycles), and to discuss scan results. An appointment with the urologist to run through all my recent GU symptoms. And end of week blood tests in prep for the next chemo cycle. I'm guessing both the rheumotologist and urologist will also want to run all their own series of blood tests. You soon get used to being cannulated.

Every cloud has a silver lining. Yesterday the car park barriers were broken so I saved the £7.80 parking cost I would have spent.

[Jann]

Good news about the progress. Hope things keep moving in the same way afer the current treatment.

[Wellsie]

I have raised the chemo inconsistency/inequality with the UHCW press department and will advise what they respond

[Chris-Bromsgrove in reply to Wellsie]

The QE in B'ham adopt the same parking policy with respect to Oncology patients. Parking costs are also equally outrageous at QE. It does get frustrating when your cyclophos is not ready and you are stuck waiting while the charges are racking up. Some of the nurses have been good and occasionally (unofficially) given me a parking pass for the day. I would be interested to see what response you get on the inequality issue.

[hamble99b Volunteer]

if your are on benefits, you can claim parking costs and reasonable travel costs.

great news about your treatments Wellsie! thanks for sharing, it cheers me up to hear good news.

regards,

sandra.

[Wellsie]

Sandra; I am not on benefits; luckily I have a senior management position in a business that is both understanding and flexible with regards to all the time required for the many many appointments I need. I've worked many long days and nights from them; its quo quid pro time

[johnyenglish]

QE at Gateshead were spot on a gave me a free parking pass for the 6 months that I was on cyclophosphamide. I just asked the receptionist in the day unit and she filled out the form for me, which is just as well as I used to be in there for 8 hours every time.

[Wellsie]

Amazing isn't it. We will have to see what their press team respond with; at the moment I've not even had the courtesy of an acknowledgement but then I guess they're not a service industry.

Chris; if I can get UHCW to see sense, then perhaps we can use this as a test case for other hospitals that consider free parking should only be given to oncology cyclophosphamide therapy users.

[suzyjeremy]

It is very expensive being ill isnt it!. I had to take medical retirement this year so my income has dropped drastically. I did have a long commute to work by car, but what I have saved on that travel has been eroded by the cost of many visits to hospital to see various specialists and have my bloods monitored whilst on azathioprine. Then of course I still have to pay for prescriptions, I have a prepayment card but it seems unfair that we cannot get free prescriptions with WG but others with different diseases do. I am not claiming any benefits either so won't get any help.

[lesleyadams51]

I agree about the cost of parking when I had a recent flare up of my Wegeners I spent ages at UHCW some days sometimes 2 or 3 times a week seeing different consultants and when it takes all day to have rituximab t gets very costly. My daughter was an A+E nurse there for 18 months and it used to cost her a fortune in parking just to work as there were no parking spaces in the staff car park.

Dont they do a scheme where you dont pay if you spend over £150 per month in parking or something like that.

[Wellsie]

I have no idea about that sort of scheme... but you'd have to be there daily to benefit from that wouldn't you?

I've now taken my parking moans over to a separate post: vasculitis-uk.healthunlocke...