Why can't LD sufferers get a Disabled Railcard?

[caroline111]

I have a Disabled Railcard because I was getting Disability Living Allowance under special rules, having been given a diagnosis of terminal cancer over five years ago. I now appear to be cancer-free so no longer get DLA or any other benefit. This means I'm no longer eligible for the Railcard. Surely if you have lymphoedema in both legs you should get one. I dread the prospect of getting on a train that's busy and with no seats. On occasions I would show it to the conductor who would quietly let me sit in 1st class. Has anybody else successfully obtained a railcard on the basis of lymphoedema alone?

[Chrissie2]

I'm so glad you are now cancer free after being diagnosed with terminal cancer. I'm sorry I cannot h ellp with the railcard situation but I have just been diagnised with terminal cancer. I am just wondering how you felt over those 5 years. I have had no energy for months. All I can do at the moment is lie in bed or sit in a chair - were you ever in that position? Hope you mansge to sort out a raikcard xx

[slavka in reply to Chrissie2]

Chrissie2 stay strong and never give up!

[veriterc in reply to Chrissie2]

I've written to Virgin Trains to suggest this to them. Anyone like to try and of the other train companies? Perhaps we could get them shamed into thinking about us!

[caroline111 in reply to Chrissie2]

I’m so sorry to hear about your diagnosis. The chemo I was given the second time was only supposed to be palliative but for some reason the tumours went and haven’t come back (although the doctors still think it will). I used to feel very ill for a week after each chemo but once the treatment finished I began to feel well. I think it may depend in part on whether or not you still have tumours. If you do, then it may explain the tiredness. If not, your tiredness may be due to the treatment and also the psychological effects of being given a terminal diagnosis which is pretty devastating and affects people in different ways. But Macmillan did a survey recently and found that 17,000 people in the UK are still alive having lived with a terminal diagnosis for at least four years. You are an individual and your illness may not develop in the way that doctors expect. If your body wants to rest, it’s probably best to let it. I found this book very helpful and comforting ‘Anticancer – A New Way of Life’ by David Servan-Schreiber’ although I didn’t follow the dietary advice particularly, other than reducing my dairy and sugar intake, which had been quite high. I think the reason I’m still alive is that I stopped work and removed a major source of stress in my life (although that has now produced other problems, namely lack of money). I hope the doctors have put you in touch with Macmillan and/or support groups as it’s so important to have someone to talk to. I’m thinking of you and hope you can email sometimes to let us know how you’re getting on. Caroline xx

[Chrissie2 in reply to caroline111]

Thanks for your reply. I hope that I can live beyond the weeks/months they have given me. I need to see my grandchildren growing up. At the moment I see them in short visits as I am so tired. I am improving a very little bit day by day so who knows?? I am in touch with macmiilan and am going to the lical hospice for a chat about going for a day each week when they do arts and crafts, alternative therapies etc. I hope you manage to get a railcard xx

[veriterc]

URGENT - Just had the big boss contact me, wants to take this up to see what they can do to improve things. Can you let me have a short explanation of what happened, and what you were told about qualifying for Disabled Railcards. This is IMPORTANT - and could help us all, so if you were able to send me info to [e-mail] as well as Reply - this will make sure I get message to right person.

[caroline111 in reply to veriterc]

As I said in my original post, I qualified for the Disabled Railcard when I was getting DLA under special rules because of terminal cancer. I no longer get DLA (or any other benefit) because I appear to be cancer-free although still have regular checkups. The railcard expires in March. I have looked at the other eligibility criteria on the railcard website (Are You Eligible? tab at top) but none of them apply to me. It doesn’t mention lymphoedema.