DWP ESA with complex medical needs.

AISJKF

My husband has an extremely rare, complex incurable disease.  He has a RESPECT document and is on the palliative care register.  We have been in receipt of income related ESA for several years now as we both had to medically retire.  He was originally my carer (unpaid) and when his health failed I also became his carer with receipt of Carer's allowance. We receive PIP and ESA.  As I have failing health and my husband's needs are extremely complex, the Community Matron applied for Continuing Health Care Funding last year which was granted but unable to access. In May this year, our ESA suddenly reduced by £45.60 per week.  I have telephoned the DWP on a number of occasions who are "unable to give explanation for this".  I have written to the DWP asking for an explanation to no avail?  We have to run and electronically charge daily a lot of medical equipment, inclusive of a RAIZER chair which has to be built up around him to lift him from the floor, a different type of electrically powered chair for him to lie in when he is in the throes of spasms, a stairlift, breathing devices, electrical toilet, plus irrigation equipment.  

Our circumstances have not changed.  Nobody seems able to advise as to why the benefit rate has been reduced.  We both still have to attempt to physically care for each other due to both having medical issues.

Can anyone advise towards any criteria the DWP should follow to inform us of any changes to benefit?  I have requested a breakdown of information about ESA but have not received any information.

tacpot12

£45.60 is exactly the Disability Premium for a Carer. So, because you are/were claiming Carers Allowance, if this stopped that would explain the reduction. 

I'm not sure but possibly qualifying for the Continuing Health Care Funding might have ended the Carers Allowance? Are you aware of that you are still being paid Carers Allowance? 

You can ask the DWP for a Mandatory Reconsideration of their decision to stop the Disability Premium IF you are still claiming Carers Allowance. You should ask them to back date the decsion if the change was made for no good reason.

It's not clear why you qualified for Continuing Health Care Funding but haven't been able to access this funding. Is someone, e.g. the Community Matron, helping you with this? 

AISJKF

Hi 

Thank you for your reply.  I appreciate it.  

The Community Matron and the OT made the application for the Continuing Health Care which was granted in December 2023 but we have not used or been able access this service.  The CM made the application for if I have to attend to hospital or have further surgery?  However, as we have explained several times, it's not feasible to be able to use the service.  

My husband's condition is extremely complex.  Anyone entering the home could and do, trigger my husband's condition.  We have to have complete silence.  If he is touched it can cause spasms so ferocious it can fracture his bones.  His spasms can be triggered by many things.  Therefore, we can't have different carers etc coming into the home.  However, he does have chemotherapy to try and slow progression of the disease and we live very much of a bubble existence very similar to during the pandemic, each trying to support the other with daily activities and medications etc as I have low vision and other difficulties,  so our circumstances have not changed.

In truth I do not understand the benefits system.  It was an employee of the DWP who made all the original applications on our behalf.  

I will try and write again and request a mandatory reconsideration.

Thank you.



  

Alice_Holt

Do you both receive the Daily Living component of PIP ?


If so, have you made this clear to ESA during your correspondence with them ?