I've recently been a bit niggled that the hospital that provides my care provides free parking to oncology patients on chemotherapy. Fair enough. But no rebate for chemotherapy patients in rheumatology. How can that be? I get the same treatment, and my life expectancy without my treatment is comparable (and I have it on good authority that it is). So I've written to UHCW to get a statement from them why I am being discriminated against. Copy of the content below for information, and I will post up UHCW's reply when I receive it. From comments on a previous post here i think the same policy is in operation at UHB and wonder if there is a national dictat on this? Anyway...
"I have read terms and conditions of car parking, and they state that Oncology patients receiving chemotherapy treatment may park for free. I am currently on chemotherapy for a serious condition, a derivative of vasculitis called polyarteritis nodosa. Part of my treatment regime is cyclophosphamide, exactly the same treatment as, for example, ladies with breast cancer are given. Like any oncology patient, my prognosis without this treatment is very poor.
I would therefore like to know why non-Oncology patients on the same treatment are precluded from free parking despite receiving exactly the same treatment. There will be a number of other vasculitis patients who are also in the same boat; these are all treated by the Rheumatology team in the Daycase Centre near Ward 2. I must say that this strict definition feels clinically illogical and particularly discriminative. With all the appointments I need to attend with consultants, blood test and other investigative examinations, I currently spend over £80/month on parking at UHCW. Would someone please explain to me the rationale behind this decision, and why such an inequality exists?
Many thanks..."
Written by
Wellsie
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You could add .... that 1 and 5 year suvival rates for people with ANCA associated Vasculitis are stastically worse than they are for both Breast Cancer and Prostate Cancer.
Some hospitals give you an exemption card to put in your car.. I was given one by the ward sister when John was having his Chemotherapy.
If you want any support on this please contact John.
I have found several other Trusts that also apply the same rules... so I'm interested to see what they come back with, and possibly in where in Whitehall i have to escalate this to next.
I seem to be the lucky one. At East Surrey Hospital (near Redhill), the chemo unit issues a voucher to give to the parking attendant. This is given to anyone who receives chemotherapy.
I hope the parking people at East Surrey do not read this item and get ideas in their head on how to get money out of me.
As the Director responsible for parking (among many other things!) at East Surrey Hospital we are always looking to see how we can improve patient experience and we have no intention of removing any parking concessions that are currently in place.
Charges and rules for car parking are determined by each hospital which is why there is such a variance across the country.
If you would like to discuss this further please contact me by either e-mailing ian.mackenzie@sash.nhs.uk or telephoning 01737 231988
KInd regards
Ian
Prejudice and being penalised for being chronically sick and disabled is something we all face at the hands of the NHS but that doesn't mean we have to accept it. I appreciate it's challenging to give up energy already limited by the disabilities brought about by vasculitis but if we don't fight the greed it will simply get worse.
My local hospital charges £1 for the first 1.5 hours but prior yo getting my Blue Badge I refused to ever pay more than £1 on the basis most clinics ran late and therefore why should I pay for their inefficiencies.
At Addenbrookes, where I'm also treated, it can cost £12 a day but if you have an appointment letter,card it is reduced to a maximum of £3 irrespective of how long your in-stay.
Perhaps this is an issue V-UK could begin an active campaign on, maybe in conjunction with Rare Disease UK?
I would hope so, but at the moment I think it's a question of identifying if this is just a localised policy to my trust or region (although I think there must be some national guidance somewhere on this).
It is also refreshing to know that many of you do not get penalised too; so congratulations to those health authorities who have applied common sense.
First reply from the hospital:
"******* is unfortunately off sick probably until Monday. It is possible she has received a response and I will ask her to get in touch on her return Monday.
Regards
********** ***********
Complaints Manager
University Hospitals Coventry and Warwickshire NHS Trust
I have to visit local hospitals on a regular basis and, in particular, Podiatry after they made a mess of my foot. It costs £1.50 to park there and they do not honour Blue badges. So I just park across the road on a double yellow line with my Blue badge.
It is also interesting that they put the disabled bays right next to the hospital, yet the pay machine is right across the other side of the car park !!!
I'm currently receiving cyclophosphamide at York Hospital and costs me up to £5.70 for each visit to park. When I go to my local hospital at Selby for bloods it is totally free of charge and it doesn't matter how long you park there for. Both hospitals are part if the same NHS trust!!
I was a mcmillan cancer patient for a year while having treatment for breast cancer,i did get free parking whilst i was at our mcmillan unit having treatment,but for every other appointment with the breast care unit or gyne department or the geneticts department,all related to my breast cancer i had to pay to park,i had many many appointments all throughout the first year.i am in my 3rd year since having bc and have just had another surgery related to breast cancer and will not be given the all clear for another 2years,but i am still paying for my parking,i visit the mcmillan unit next year,so i will have to make the most of my free parking that day!sandy.
OK so i now have a full response from the Trust. Wordmanship 1 - 0 Common Sense is the summary. Here's the full reply:
Dear Mr Wells
Please accept my apologies for the delay in getting in touch with you, I was unexpectedly out of the office until this week. I have now received comments from the Trust’s Chief Nursing Officer; our Director of Estates, and our PFI and Estates Associate Director of Finance who all extend their thanks to you for raising your concerns with us.
Regrettably, although we appreciate that you have a debilitating condition that requires a form of treatment similar to cancer treatment (in that it uses the same drugs) the Trust has to make very difficult decisions as to which patients should receive parking concessions. The concession we offer is based upon patients with cancer requiring chemotherapy, and although we would like to offer concessions to a range of patients, we have to limit those to the most serious cases.
As you may already know, the NHS as a whole is expected to save £20bn by 2015. The budget for car park concessions is allocated to Estates, and by increasing funding to Estates to include a wider range of conditions, in effect means that there is less budget to spread elsewhere within the Trust. In essence, increasing the Estates’ budget to allow for further concessions would take essential money away from patient care.
Parking concessions are regularly reviewed by the Trust, and we are always seeking to improve our patients’ experience where we can. Regrettably, on this occasion, we are unable to make any changes to the current concession structure, but please let me assure you that the Trust will bear your comments in mind during future reviews.
Thank you again for raising your concerns with us. I do hope your treatment is going well, but please do not hesitate to contact me if I be of any assistance in future.
Thank you ******* for the feedback provided; I understand there are budget implications and that these days the NHS is no longer balanced by clear logical thinking, but on the need to delicately balance budgets and PFI initiatives.
It is a shame that the very small number of vasculitis patients are discriminated against. It seems grossly unfair given my prognosis is clinically worse than a cancer patient and there are probably considerably fewer vasculitis patients under UHCW treatment. I am aware that there are several other hospitals in the UK including UHB who operate a similar policy. I will now consider raising this with my MP and the charity Vasculitis UK to lobby for wider changes in policy and/or budgetary help for local trusts to prevent future and blatant discrimination.
A further reply, with I believe some sympathy too:
Dear Mr Wells
Thank you for your further email. It is very regrettable that we are not able to expand our concessions further. As I said in my response, the Trust has to make very difficult decisions and I suppose someone is always going to be on the wrong side of it and feel aggrieved. It certainly wouldn’t do any harm to seek advice from your MP and Vasculitis UK, especially if you feel this is a national problem.
I don’t know where you live or what your circumstances are (and I realise this isn’t the point) but is there any way you could get here by public transport, or even taxi, or maybe ask a relative to drop you off? Perhaps not for every visit, but possibly now and again to take off some of the financial burden?
I appreciate that this is disappointing, but I do hope you’re able to eventually obtain a satisfactory outcome. I will be very interested to see how this progresses.
This has to be addressed...I was referred To QE Birmingham and attended there for 2 years and the cost of travel/petrol/car park charges/stress of M6 were more than I could afford or bear...I am now being treated by a Manchester Renal team just 20 minutes drive away and a £2 charge for all day parking. The former cost me an arm & a leg but I feel I am in the right place now for which I am so grateful.
I have today sent the following email to the Department of Health:
Dear Sirs
I understand that a review of hospital car park charging was conducted in 2010, resulting in national guidance to provide free or reduced car parking for cancer patients on chemotherapy.
I have a rare disease called vasculitis (my own derivative, polyarteritis nodosa, is extremely rare). Due to the severity of my illness, my treatment includes chemotherapy, and without this treatment my prognosis would be similar or worse than someone with early stage cancer. With all the tests, therapies and consultant appointments I have been spending £80/month on car parking charges.
There are very few patients that receive chemotherapy treatment for vasculitis in the UK, probably only ever several hundred concurrently across all the trusts, so why are we treated different to Oncology patients? We have the same prognosis and are being given the same drugs, with the same side effects. We need all the same perpheral therapies and blood tests. I think it is about time this anomoly was removed or abolished. In summary, it feels rather like I, and other vasculitis patients, are being discriminated against.
I have contacted my local trust, who have told me they will not be changing their car parking policy. I am also going to raise this with my MP, but in the meantime I would like you to consider this dichotomy.
I appreciate that as there was a review of car park charging structure in 2010 you will not re-open this or make wholesale changes, but I would encourage you to think again about what is a clear, and I'm sure unintentional, discriminatory anomoly. I'm sure you have the capability to issue a national directive to increase the recommended scope of free car parking without the need to spend anymore of the good taxpayer's money.
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