Refused a home assessment, please help — Scope | Disability forum
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Refused a home assessment, please help

davelectronic Member Posts: 3 Listener
Hello to the Community. 
The Scope website seemed to jump off the page at me, so I joined. Thank you for that.

I'm not sure where to start, I'm a 20 year sufferer of ME cfs, also chronic gastric distress. Recently I had to go through the PIP Assessment, the process was fare, and I was treated with care and respect. This was September 2018, I was granted the enhanced rate of care and mobility component. 

Previous to this assessment I had been receiving the low rate of DLA for around 3 years. I'm in an advanced state of deterioration physically. My diet is very poor nutritionally just due to the limited things I can eat daily. I have significant muscle wasting in both my legs, and struggle with a few tens of meters walking.

My life has been as a virtual prisoner, only going out to DR. Appointments and hospital Appointments. Even then it was local door to door via taxi. After the PIP assessment I applied for the use of a mobility scooter. This was granted, and I've used the scooter about five times to visit my local Tescos some 200 metres from where I live. I have had the mobility scooter since early October 2018.

Recently I have had to fill out a work questionnaire for the DWP. This was sent back in November 2018. Since then I've been asked to attend an assessment at a centre some 22 miles away from where I live. I have no problem with the going through the assessment, although I don't believe people get treated fairly in this system.

As I have problems with sickness nausea vomiting and diarrhoea, I asked for a home visit. With this request I was asked to supply a Doctors letter explaining why. I did this, waited 3 weeks just to be told the letter and request where rejected. I was not given a reason at first, as to why this request was rejected. I was given a head office number to call, being told they would tell me why. I made the call to this head office to ask why the request was rejected, and was told not enough information in the DR's letter.

Today I have contacted my Doctor to ask for a second letter, detailing more in depth about my illness and reasons I can not be far from a toilet facility. Not to long ago I asked my local taxi company the cost to sanitize a vehicle that had an accident in, that was substantially high, and was told the company would refuse to take me anywhere in the future. Understandable really when you think the car is there livelihood. At this point I've no idea if my GP will supply this second letter...
And was asked to fax this through if I obtained a second letter.

Sorry this is a long post. I'm beginning to give up now to be honest, I have Family problems also, which is wearing me down. The mobility scooter seemed like a glimmer of hope in a worthless future, it was more of a sanity check than a use daily thing, just breaking the hopeless up at times. For some time I've been fighting off thoughts of ending things, at times as I'm  so I'll I just don't want to carry on. Being I'll is a constant battle, only to be made more impossible by process that zap you physically and mentally. 

Today has been the closest I've come to throwing in the towel, I just can't seem to see a positive way forward. And as my home is over 14 floors high, I needn't look far, at the moment I'm clinging on for my 13 year old Son. I think the world of him. But this relentless illness and barbaric process what is the ESA assessment is destroying me.

My appolgies for such a long post, and thank you for taking time to read it.

I'm sorry a lot of it is negative in nature, but despare bought me here, if for a last attempt to find some light at the end of the lifeless existence.

Thanks again.



  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @davelectronic, and a warm welcome to the community!

    Thank you for sharing this with us, and I'm so sorry to hear about your trouble getting the home assessment you need. Hopefully our members will be able to advise on the best way forwards here.

    You are a member of our community and we appreciate you. If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at [email protected]. You might also benefit from reading MIND’s information on how you can help yourself.

    If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.

    Most importantly, know that you're among others who understand and are here to listen, here on the community. We're all rooting for you, and I hope our members will be able to provide some guidance. I hope today is as kind as possible to you.

  • davelectronic
    davelectronic Member Posts: 3 Listener
    Thank you for the welcome Pippa. Sorry for late reply, fighting an infection completely leaves me obliterated. At the moment my moods reasonable, at least those around me think it is. The whole "had enough" scenario has been going on way before either assessment came along. The only difference is they add weight to the negatives. I have three kids, both my Daughters are in there early 20's I missed out on there growing up, almost completely in terms of activity. My Son is 13 years old, and I'm missing things a Dad would be out and about with his Son.

    Over 20 years of illness has taken its toll, not wanting to get into to personal of problems...
    Both my partner and myself had to endure nearly 2 years of social services intervention in our Family. My Family went through a disfunctional period, my younger Daughter abused her younger brother. This lead to her being taken into care, and social care for almost 2 years for my Son and eldest Daughter and us as parents. Today my Daughter who was in care is allowed to visit us weekly with no outside supervison. My younger Daughter today suffers bipolar and personality disorders. Where no longer in the care of social services, but I blame myself for not being more attentive during her needing us as parents. My Son was awarded £16'500 in compensation for what happened. We where asked if we would support this claim before social services undertook the claim. 

    My eldest Daughter left home to move in with her Nan, my Mum. Over the last 5 years or more she has drifted apart from all of us, and not in a positive way. She blames us, and her Nan. Who played a big part in helping when my three kids where growing up. My eldest Daughter became a Mum herself last year, initially we got to see our Grand Daughter. But sadly this has now stopped. My eldest Daughter won't even allow her Mum my partner to post Family days out pictures to social media.

    I feel my Daughter sees her Family as tainted by what happened in the past. Leaving her Nan's who is now 70 years old, she left no forwarding address, now not wanting any contact with any of us, even a kid Brother. She has blocked all our numbers, even her brother. I'm sorry if this is putting to much out here, but my problems are complex. This is another negative adding weight to not wanting to carry on.

    Currently I'm on twelve different prescription drugs a day, that's just to function,  even if it's just an existence. Now these include cardiac medication. I have to ask myself every day, what do I contribute to this world, my Family, everything. I know other Familys might have endured similar problems, I don't think where unique. I will carry on for now, I still have my younger Daughter with her troubles, and my Son, Partner, and Mum to think about. Sorry again if the above is a bit to much, it's much more than just a few aches and pains. As a consultant enithesist asked me about other medical issues before I was put under for gastric surgery.
    A healthcare professional with no clue what ME cfs really is..

    That's when you realise how poorly understood the illness in you have suffered from for over 20 years.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @davelectronic, no need to apologise for sharing. I'm so sorry to hear about your experiences and all that your family has been through, and particularly how it's impacting you now.

    You're more than welcome to share, however do know that the forum is not a substitute for medical advice and you need to be communicating with a professional about these things, so they can support you appropriately. I think it would be a good idea to arrange some time with your GP, is that something you can do?

    And as a complete side note, I have ME/CFS myself, as do many of our members. It's still so poorly understood in the medical profession, but know that things are improving all the time and you're among others who understand here. I hope today is as kind as possible to you!
  • davelectronic
    davelectronic Member Posts: 3 Listener
    Thank you Pippa.
    I have regular appointments with my GP, the next one is about a week away. My GP has supplied a second letter, explaining why I can not travel the 22 miles needed to get to the assessment centre. The head office said I can fax this to them as time now is not on my side. The letter put together with all the necessary facts and clinical detail.

    So now I have to wait and see...
    My GP has been very supportive, so that's it for the moment. I understand the assessment has to be done, but not at the expense of wrecking some taxi drivers livelihood. In the past I've trashed an ambulance with vomit everywhere, all I could do was appolagies for the mess. That was a 2 mile 20 minutes trip, if that. 

    If I trash a taxi they will no longer take me to the hospital in my home town. And I still need there services in the future. The only way I could travel 22 miles, is with an atiemetic injection some 30 minutes prior to travelling. And even then it's not 100% guarantee of no accident.

    Thank you again for your support.


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