Update re Forsteo funding stopped.

[Angelicspirit]

Dear Friends,

At last after a very worrying couple of weeks, Margaret has the result that sadly we’ve had to fight for. We have had wonderful assistance from the nurses on The ROS helpline, throughout and today was no different. What was also no different today, was the conflicting information we were still getting from Frimley Park Hospital regarding funding and regarding who did what and who said what. Just before 11am we finished yet another conversation with the promise of yet another phone call sometime this week and possibly from the consultant himself. However the lady we spoke to told us that it was extremely unlikely that further funding would be approved by the local CCG.

We thanked her for talking with us but assured her that as we had waited for long enough, we now needed to take action and an already prepared e-mail to our local MP ( Jeremy Hunt) would be sent today.

We ended the conversation, non the wiser as to how and why things had gone so wrong without any warning to Margaret, the patient.

Just over 2 hours later, the same lady phoned us to say that Margaret’s consultant had now secured funding from the The hospital trust because of Margaret’s particular case. We are told that a prescription will follow for another 6 months of Forsteo.

We are of course very happy and grateful to those that have recognised that this is the best outcome but I cannot fully convey the upset, stress and down turn in Margaret’s state of health since learning from a courier that her medicine was stopping.

All of you on here have played such an important part in helping Margaret through this time and we both send our heartfelt thanks.

To the nurses on the ROS helpline, thank you so much for patiently listening to us and giving us guidance.

To you all, we wish you a safe and peaceful Christmas.

Steve & Margaret Oliphant

🙏🏻❤️🎄👼🏻

[springcross]

Hi Steve and Margaret. I'm really pleased to hear Margaret has her funding for the six months at last, thanks to your efforts and the efforts of the nurses at ROS but you really have had to fight for it haven't you and I'm sorry to hear her health has taken a down-turn as a result of it. It sounds that the left hand didn't know what the right hand was doing at the hospital and it was just as well you stood firm and got the result you wanted. I hope the New Year will bring an improvement in Margaret's health and wish you both a safe and peaceful Christmas too.

[Angelicspirit in reply to springcross]

Thank you Springcross. Margaret has perked up a little today. I think we’re both mentally exhausted, as it was so worrying. No sign of new prescription yet but that will probably take a little while. Margaret will start her last available pen tomorrow. We hope you have a lovely Christmas.

[springcross in reply to Angelicspirit]

I'm glad to hear that Margaret has perked up a little Steve, I don't doubt you're both mentally exhausted and I understand how worrying it was for you both. I hope you both have a lovely Christmas too and hope that Margaret doesn't have to wait too long for her new prescription. All the best. x

[wellness1]

I'm glad you got there in the end, but what a stressful and difficult process. It shouldn't be like that. I hope you can try and put it behind you now and have a safe and relaxing holiday season. Best wishes.

[Angelicspirit in reply to wellness1]

Thank you sincerely from us both. Gentler days ahead, we hope!

[Fruitandnutcase]

Steve and Margaret, we’ll done to you both. I am so pleased to hear that you have finally got Margaret’s much needed Forsteo. The upset that you have been through over this is beyond appalling, to hear from the courier that your course of treatment is finishing early is shocking. It is interesting isn’t it how the mention of your MP brought about such a rapid change in the situation.

I hope now that this is over you will both be able to relax a bit and enjoy the peaceful Christmas you both deserve.

Love and best wishes to you both.

Liz 🎄🙏❤️

[Angelicspirit in reply to Fruitandnutcase]

Thank you Liz and yes, it is ‘strange’ isn’t it, that suddenly there must have been some sort of panic when we mentioned taking matters further. In truth, the e-mail to our MP was already written as it was becoming increasingly clear that we weren’t making any progress.

Please stay safe! Steve & Margaret

[Fruitandnutcase in reply to Angelicspirit]

Thank you both, you stay safe too and have a lovely and peaceful Christmas.

[Mavary]

well done you for fighting. It looks like this is what we have to do now. Just because we are older we are not on the scrap heap and still have a lot to give. It looks like this is the way it’s going though for older people. Anyway I’m glad you’ve had such a good outcome. X

[Angelicspirit in reply to Mavary]

Thank you Mavary. You’re right, it doesn’t bode well for the future, does it? Such a shame when you’re trying to live a peaceful life ( albeit painfully ) that Margaret had to shout so loudly.

Please take care. X