Ask your MP to act!

Loulou82xx

Hi everybody this is my first ever comment so I apologise in advance if I make any mistakes.

My situation is I am disabled and have been since 2006 my husband is my fulltime carer and in 2022 my daughter was diagnosed with acute lymphoblastic leukaemia at the age of 24 we have been caring for her ever since that time as she has no immune system and the treatment is brutal so she needs support. She receives PIP and also ESA but nothing else as she was saving for a deposit for a house so has more in savings than is allowed. She worked for the NHS in the ICU and worked so hard during Covid including so much overtime to enable her to save money.

Anyhow we don't receive any extra benefits to care for her or any allowance made due to her living with us, we have to keep the temp high due to her not having any immunity and any temp above 38 means she has to go to hospital straight away for IV antibiotics to try and keep sepsis at bay. She has already had sepsis twice and we thought we were going to lose her.

The cost to keep the heating on 22 degrees is huge for us to bear on Universal credit we have just migrated over and I have to keep providing FIT notes whilst waiting for them to process my UC50 form we have to buy the best possible food we can afford to give her system the nutrients so lots of fresh fruit and vegetables and lean meat including red meat for her iron levels so our food bills are huge and we are already under so much stress due to the fear and grief we are going through at the possibility of losing our precious daughter.

I have emailed my MP explaining our situation but have not heard anything back. We are fortunate to have had help from Leukaemia care and Macmillin who have given us small grants which helped pay for a new bed for her and I am forever grateful to the NHS for all they do for her but her PIP only covers so much we have transport costs daily which eats into her PIP and so many extra expenses for medical supplies such as dressings. She is so much pain after chemo that she cannot bear to sit and wait for hospital transport which sometimes takes four hours and she feels so sick so we end up getting a taxi home which is £30 per day so the PIP soon goes.

I really think there should be some help available for people in similar situations and hope that MP's listen and stop making life so hard for people in genuine need.

Sorry for such a long message but the above is basically what I have sent to my MP.

Thanks for your time in reading.

WhatThe

Loulou, welcome to Scope 💜 thanks so much for your time in writing. You have explained beautifully. I hope there is financial support for you to access through members' knowledge and that your UC migration goes smoothly. From UK Parliament -

What should I do if my MP hasn’t answered my email/letter?

MPs receive a large amount of correspondence, so cannot always reply immediately. If you haven’t heard back from them after about two weeks, you should follow up your email or letter with a phone call, or make an appointment to go and see them at their local surgery.

💜

chiarieds

Hi @Loulou82xx - & welcome to the forum. I'm sorry to read how much you as a family are going through, & every respect to your daughter having worked in ICU during Covid. It must be devastating to see her so ill now.

Do get your husband to say he's a carer for your daughter, if you haven't already done so, as, with your own health issues, should you be awarded Limited Capability for Work & work-related activity (LCWRA) with UC, then you can't also receive the Carer's element, rather LCWRA, as this higher amount would apply instead, but your husband can get the Carer's element.

Do also please keep on providing fit notes yourself until a decision is made following your Work Capability Assessment (WCA). Gaps in your fit notes can affect when money is paid from/due.

Possibly Scope can also advise with your energy costs:

https://www.scope.org.uk/community-disability-energy-advice

As a family, & as parents looking after your young daughter, you deserve all the help that can be found.

I have had a reply from my MP, but unfortunately it really didn't say too much.

Albus_Scope

That's great, thank you for sharing @Nashota

Amaya_Ringo

Is it my imagination, or did some copying and pasting happen in the text of that letter? :) She mentions putting disabled people at the heart of things twice.

charlie72

https://forum.scope.org.uk/discussion/123845/ask-your-mp-to-act

Iv'e emailed my MP numerous times and never get a response from him, I appreciate he's probably very busy but I just feel ignored, especially when its about benefits changes. They just don't seem to care at all about letting us know what's actually happening, keeping us in the dark like mushrooms. They won't clarify anything, conflicting answers from different mp's about W.C.A, it's all very annoying, frustrating, and highly stressful, especially when alot of people suffer from mental health issues, made worse by this useless government and rubbish PR team.