Aggressive rare glial tumour- fasttrack funding

Hi, I really don't know if I am asking the correct expert this question of if indeed the question will have an answer but it's bothering me and any help or information I can glean will be of benefit. A family member has recently been diagnosed with a rare aggressive glial tumour after a fall. Three weeks ago they were fine apart from the odd dizzy spell and balance/sight difficulties which the doctor put down to cataracts. They recently had new glasses but these were not helping. The person is 84. After a CT and MRI we were given the devastating news that the tumour was inoperable and palliative treatment would be the way forward, rapid deterioration would follow in three weeks and the tumour so rare only 268 or so people were diagnosed. So we had to move quick, our loved one is now in a care home and is coping better,on steroids and anti consultants although seizures have not begun yet. A reduction in steroids excaberated the symptoms and headache/dizziness so they are now back to the original dose. The consultant said they qualified for fast track funding as prognosis only 3-6 months. A week on they have settled and started to join in some social activities with other guests but we have been informed the fact reassesses the funding every three months and if they think they don't qualify then payment of fees would become due. This is not an issue but my relative has now got this idea that they can't participate in the social activities because they might be seen as doing too well and the fact the CCG can't see inside their head and they could be thought of as a fraud. We obviously want them to enjoy themselves as much as possible before this rapid deterioration starts, indeed they may well be comatose at the time of reassessment, in which case it probably won't be an issue, but if by some miracle they aren't, and they do participate in activities instead of lying around feeling sorry for themselves, are they like!y to withdraw the fast track..can  a DAY withdraw it? Or is it just scaremongering? It's really bothering my relative but it seems very cruel because three weeks ago we had no idea this thing was here and we have all had a big shock. Can you advise or does anybody have any experience.? Sorry this post is a bit long winded but any help would be appreciated. Thank you. Lamb.

  • Sorry,there are typos. I mean the clinical commissioning group not DAY or FACT! Oops. Sheep

  • Hi Little lamb,

    Thank you for getting in touch with us. I’m glad to see that you’re also participating in other groups within the Online Community. The support from others and the support you give to others can be invaluable.

    Please don’t apologise for the post we are glad that you have reached out. It sounds like a lot has happened with your relative, this must have been a stressful and overwhelming time for you all.

    I’m happy to hear that your relative has been participating in social activities at the care home and that their symptoms have settled down a little for them. Participating in the activities will be good for their well being and will help to take their mind off things for a while. It will be nice for you as a family to see them participating too.

    The funding for NHS continuing healthcare assesses the different needs of each person. The NHS continuing care package is normally reviewed every 3months as part of the policy. It’s not solely based on their communication with others and whether they are participating in social activities. You can find the information on this here. There is an organisation called Beacon that can give advice on NHS continuing care. You could also maybe speak with Citizen’s Advice or Age UK for some more information on this.

    It might be helpful to talk to your relative’s healthcare team about how they’re feeling emotionally. I’m sorry to see that they feel they must withdraw from participating in things and that they’re left worried about the funding being taken away.

    It’s difficult for us to say why the team have made the decision to reassess the funding. It’s important to speak with them to understand where this decision has come from and why.

    I’m sorry I can’t be more specific, but I do hope this information has helped a little. Please know that you can call us on the support line too to chat over things. The nurses are on the support line 7days a week 8am-8pm. As well as providing information, we also provide a listening ear.


    Best wishes and take care,

    Kayleigh-Cancer Information Nurse Specialist
  • Thank you for all that information. I am pleased to report she is still continuing in the activities at the moment and having a lot of fun. I will talk to the team to find out the reason why and what generally happens. I will phone the support line as well as in view of recent occurrences I feel I need some support for myself as well to give me a bit of strength to deal with everything that's going on. God bless. Love lamb.