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working up to transplant how have you found all the organising such as work and finances

im Currently working up to my transplant and am finding it difficult with all there is to think about and organise. Such as work i only work part time due to my illnesses . I have been told I will be off for about a year because of the recovery/risk of infections.

Also finances I am travelling across the country for my appointments which is very costly and will be costly for my family when treatment starts I have sent off for some forms for help with travel costs but am not on any benefits so not sure if this will be viable until i am classed as off sick.

Comments

  • Hello Becky,

    Welcome to the forum. I am the patient and families officer at Anthony Nolan. I wanted to direct to our website where you can find out more information about potential financial help.

    http://www.anthonynolan.org/patients-and-families/resources-and-information/financial-support

    We as an organisation also offer grants and information on how to apply is listed on the webpage above.

    Please contact me on patientinfo@anthonynolan.org if you have any questions.

    Best Wishes,

    Billie
  • Hi Becky,

    Do follow Billie's advice and look at the Anthony Nolan guidance on that link.

    I was on sick pay until about a month after my transplant, but was still off work then and applied for Employment Support Allowance, which I was awarded almost immediately (within two days of applying). I also applied for Personal Independence Payment at the same point, but that took over six months to get a (positive) decision; the award was backdated to when I had applied, but of course that money would have been most useful when I was recovering from the transplant... I'd advise, therefore, that you try to get your applications in as soon as you can. I was helped by a Macmillan financial advisor, which made it all a lot easier.

    Good luck!
    George
  • Hi Becky,

    Welcome to the forum.

    The financial losses were one of my greatest concerns when I was first diagnosed with ALL, and being reduced to sick pay would probably have crippled me and my family. One of the first things I did was spoke to my immediate line manager and also contacted my regional director.

    I've been lucky through my treatment I guess as my employer has been really supportive, but they are a large international company and I realise that not everyone is so fortunate. Due to my length of service I was entitled to 9 months full pay anyway, and my Director was also able to extend this to 12 months. Fortunately I was able to return to work, albeit in a reduced capacity within the 12 months so I didn't suffer any reduction in salary.

    I'm assuming that you are working so I would advise speaking to your employer if you haven't already to make sure they fully understand your situation, and that they get behind you to support you through this tough time. Speak to them about whether you can return to work in a phased manner and perhaps work a different way, such as from home initially. I have heard of people continuing to work during the transplant process, but that depends on the work you do, and don't expect to be able to work normally by any means.

    Do you have any form of life insurance at all? If so, look closely at the policy and see if there is any cover for being diagnosed with your illness. It wasn't until I was well into recovery that I checked my policy that I had for my mortgage and I had critical illness cover which named Leukaemia as being covered specifically. I made a claim and was awarded the full sum within a couple of weeks and with a small amount of topping up was able to clear my mortgage and lift a large burden off my pocket.

    Do you have any medical insurance. Whilst mine wasn't used to cover my treatment, I was able to claim a cash sum for each night I was in hospital, or each time I attended hospital for treatment, which helped support the extra burden of travelling to the hospital (60 miles from home) for me and my family.

    Your GP or your consultant should also give you an application form for exemption from prescription charges if you don't already have this. I dread to think what it would have cost in prescriptions if I'd had to pay for all the drugs I've had, so make sure you have this if you are eligible.

    Are the hospital you are being treated at able to offer any concessions to help you and your family travel to the hospital, or reduce or waive parking charges?

    My hospital had a support nurse that patients could talk to who was able to help with advice on financial support and benefits, so call on their help and talk through what you might be entitled to.

    Hopefully the link that Billie posted will be of assistance and I'm sure there are plenty of sources of financial support to help you. Don't be afraid to ask for it!

    All the best,

    Steve
  • Thank you all for your replies

    I will definitely take your advice I have had a look at the A nolan website but needs further reading :)

    I currently only work part time due to illness and my work will not be paying SSP as I do not earn enough so ESA is my option. I am not sure at what point to apply though do I wait until im officially off sick?

    My bosses are fully informed of my situation but I work in a place where the public adults and children are in and out all day, so because of the risk of infection I may be off for a year. There is no possibility to work from home.

    I have sent off for the forms for help with travel cost which i am hoping i will be eligible for as im traveling by train across the country for my appointments at the minute which costs £190 for two of us

    My illness is not classed as a cancer so I do pay for prescriptions apart from when admitted to hospital, I buy a yearly Prescription card which is just over £100 to keep the cost down.

    My family is going to take it in turns to come and look after me while having the transplant the cost of their accomadation will not be cheap but the hospital has given me a list of possible places to stay.

    I do not have insurance

    Best wishes
    Becky
  • Hi Becky, I've just read your post and it's struck a real chord! I registered on here ages ago but have been too scared to post as it then seems a bit real! I am currently waiting for a transplant as I also have two rare disorders and am currently on reduced hours, so understand the financial predicaments and the related stress. I am on SSP currently but thinking I will need to apply for ESA once that finishes. I have to pay for my prescriptions also as neither condition is cancer related. At a recent support group at my hospital, my clinical nurse specialist had arranged for a talk to be given by a benefits adviser from the citizens advice but one who specially worked with Macmillan, and although the group wasn't for cancer patients she was very helpful and I could then arrange to see her at the Macmillan centre at the hospital - maybe your hospital would have similar?

    Best Wishes x
  • Hi Lola thank you for your reply yes i now have a phone number for a benefits adviser at the hospital where i will have the transplant, I tried my local citizens advice which unfortunatley wasnt much help.
  • Hi Becky - I found them a lot more sympathetic and understanding at the hospitals centre... Sadly my experience at Citizens Advice was also not so great
  • (Sorry Becky for some reason only half my post above actually appeared still learning!)... Just to say hope you get all the info you need. It's not easy to know where to begin when there's so much going on but they really helped me so hope you get the same x
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