@Rammie18 now have a walking blue badge, the medical alert dog tag 
Oh and not yet a year and had a quick check, so far Polycythaemia vera (PV) has cost me about £2000 so far in direct costs and loss of earnings. 
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The cost issues are horrendous. Its also punishes partners and other family members by limiting their life experiences when it comes to holidays.
On the Isle of Wight, have also ferry fares to consider when things go beyond Active monitoring. Apparently they limit fares to £75 per return trip. So when the acute treatment begins theres that to deal with, along with 2-3 hours each way on the journeys.
With no Haematologist employeed here atm, I have had two blood tests done and two cancelled “consultations” and havent seen anyone in regard to my Small lymphocytic lymphoma (SLL) in almost 9 months. I have had the offer of a phone call but do struggle to hear information as at 59 yrs, I have difficulty in this form of communication.
I am now having to consider ask the local NHS hospital to transfer my “so called care” to Southampton instead. That clearly has cost implications and whilst my boss has been brilliant in being understanding the fatigue and not any threats to losing my job, I don’t get paid for the missed hours when I can’t work.
It certainly is an eye opener into the expense of getting sick, the seemly discriminate health insurance issues and the general cost of living when things such as heating becomes more of a necessity than simply being gung-ho for the sake of it.
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@Alan hi, a friend and her partner gave up their teaching jobs on the Isle of White because they could not afford to find a place to live on the island as they were starting out in their careers. The cost of the ferry, no discounts as key workers just killed it. Plus she started to have health issues and it just made financial sense to move back to the mainland for care and jobs.
I am lucky enough to be able to walk to the hospital, saving x amount in hostel fees for the car and £4 in bus fare.
Age is just a number, ask them to talk slowly, challenge them to be clearer and find language that is understood by humans not IKEA naming machines. The Specialist Nurse gave me that advice when I complained about a couple of phone calls. Try asking for a zoom (other services are available ) call, I have found it is easier than a phone call because they have to make eye contact with you.
Two days lost this week due to hospital visits, self employed, so no pay.
Being ill is becoming very Victorian again, becoming the preserve of the wealthy and a postcode lottery of charity for the rest of us.
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Hi @Alan a great big welcome to our forum and I really agree with the points that you make in your post and @clickinhistory’s response.
It might be worth contacting the Leukaemia Care charity and the Macmillan Cancer Charity to see if they can assist you both.
The Blood Cancer UK support line might have some ideas too on 0808 2080 888
Look after yourselves
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