Issues Accessing Personal Budget - Your Experience? Any Success? Advice and Support Please!

Kimmeka
Kimmeka Community member Posts: 4 Listener
edited October 20 in Housing and independent living

Hello , 

So Personal Care, Health Budget or Integrated Budget via Direct Payment -

Has anyone actually achieved this holy grail? 

OR  Are you in the same boat and having endless issues accessing a Personal Budget? 

Please read My Experience below and share yours but,  PLEASE ONLY SHARE organisations you or close friends and family have direct POSITIVE experience of: 

Do Recommend any organisations, resources, support, advice and guidance that has 

helped you successfully access your own Personal Budget.


This way  we can help support and all learn from each other and avoid going crazy in the process. As currently I am feeling very alone lost with all this and figure I cannot possibly be the only one struggling . . .


I am especially interested in:

  • Advocacy Organisations
  • If anyone has sought legal advice with the process?
  • Personal Budget support forums / groups, ideally with a focus on supporting Neurodiverse folks ( Autism, ADHD, Mental Health etc.)
  • Useful Resources (the more specific the better); books, podcasts, online, doc/info.etc. 

My Experience:

I am an AUDHD  Gal aged 44,  late diagnosed: ADHD, 37; Autism 47; Dyslexic, 24 and mental health issues, due to being misdiagnosed for so long. I live in Walthamstow in London (Waltham Forest).

Unbelievably have managed to secure a personal care budget = great, 

BUT I am unable to access or use it = not so great.

Each month since Feb this year Waltham Forest has paid into my Direct Payment account in my name which I can log into and have also  been issued a bank card. The balance is now £1846.59.

The problem is I cannot afford to pay the amount I have been financially assessed to pay. I'm sure a mistake has been made either bythe council or  myself, as I did not seek advice when I submitted info for the assessment. I asked for a review  of the calculation as advised but was asked to re-submit financial information but felt I needed advocacy support to do this correctly and  had become too stressed and overwhelmed by the process . So in may I asked to be referred for advocacy support. 

This also  coincided with the only support I was receiving through Access To Work coming to an end, due to the fact I was no longer able to work partly due to the stress of trying to access the personal budget. The aim of which was  to put support in place to help me better manage and cope with my life day to day as I was overwhelmed, Burnt out and could no longer continue the boom and bust cycle I had become caught in.

I am still waiting to access Advocacy Support Waltham Forest is legally required to provide. 

From my research and info supplied the council I believe Waltham Forest POhWER are supposed to provide this. Although a social care worker said POhWER advised they were unable to provide support with challenging the outcome of a client contribution or assist with direct payments but they can support with a Care Act Review. Is this correct? Maybe I do need a care act review The social worker has now sent a referral to Citizen Advice Bureau (CAB). I asked how long this would take for them to get in touch but was unable to advise and just gave me a tel no. for the local CAB.

The result being that for:

  • 9 months I have been paid a personal budget I cannot access
  • 6 months  I continue to  wait for advocacy support

I applied for social care support in Spring 2022, 2 years, 6 months ago 

I still have no support in place.

Thank you, KImmeka

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