WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

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Wednesday, 24 August 2016


The Norfolk Health 'Runaround?'

A question I have to ask is: Does the NHS in Norfolk have deliberate devious policies to prevent or hamper access to some services? The way I'm being treated here strongly suggests that is so.

“A personal health budget is an amount of money to support a person’s health and wellbeing needs, planned and agreed between the person and their local NHS team. The vision for personal health budgets is to enable people with long-term conditions and disabilities to have greater choice, flexibility and control over the health care and support they receive...
Regulations 201317 set out CCGs’ legal duties relating to NHS CHC and CC rights and personal health budgets. These include duties to publicise and promote their availability, to provide information, advice and support, to consider requests for personal health budgets and to ensure they have the systems and processes in place to be able to make this provision.” (NHS England, 'Guidance on the “right to have” a Personal Health Budget in Adult NHS Continuing Healthcare,' September 2014)

At the beginning of July 2016 I wrote to the South Norfolk Community Commissioning Group (CCG) asking how I should apply for a Personal Health Budget. On 22nd July I had e mail from Peter Witney, PHB Team Manager, NEL (North and East London) Commissioning Support Unit. This said: “If you are not in receipt of NHS Continuing Health Care... then currently you are not eligible for a Personal Health Budget. You would first need to contact either your GP or Social Worker and ask them to make a referral for NHS Continuing Healthcare...” (my italics).

I next mailed my GP asking him if he could please make a referral for Continuing Healthcare. I received a practically immediate reply (02/08)saying: “Hello.Doctors never do these, our district nurses do so will ask them to see you and do referral (sic).” Then (09/08), from the GP's secretary: “Dr... has asked me to acknowledge your email as above when you ask (sic) him to make a referral. Unfortunately this is something that GP's dont (sic) do referrals for and Dr... has suggested you contact Social Services or the District Nurse.”

I mailed 'Social Services,' Adult Social Care explaining what I was requesting. Shortly after on the same day, I received a phone call from and 'Assistant Practitioner' who, in a long conversation, took exhaustive details of my request and my medical conditions: Degenerate lumbar scoliosis with stenosis and nerve root problems; COPD; Type 2 Diabetes; Cervical Oseoarthritis; Peripheral Neuropathy; Single Sided Deafness (left mastoid exposed); Essential Tremors; Shortened colon; and Chronic Depression. She then told me she would have to speak to colleagues for advice. Later that day I received an e mail saying:“It was lovely to speak with you. Further to your enquiry, I can confirm that I have consulted with the Practice Consultant Occupational Therapist and been advised that a personal health budget is separate from social care. Health Budgets are a relatively new introduction and are being introduced in different ways in different areas. From what we understand in Norfolk they are being used for people with continuing healthcare... Apparently Social Workers do not take the lead with the health budget, as this is a health initiative...I am sorry that we were unable to be of much assistance, however if you feel we may be able to support in the future, please do not hesitate to contact the main 0344 800 8020 number.”
"Health Budgets are a relatively new introduction!” Strange thing to say when you consider, a few yars ago,  we at Equal Lives were commissioned by the then Health Trust (before CCGs) to carry out service user work on the plans. Ah well.   

So the remaining option was a 'District Nurse' so I found (on the internet) that, in Norfolk, these are based at Norfolk Community Health and Care NHS Trust. Finding out who to contact eventually revealed PALS (Patient Advice and Liaison Service). I mailed them over the weekend explaining my request. On Monday 15th I had mail: “...I have been in contact with the South Locality Hub regarding how you can contact the District Nursing service. In many cases patients are referred by their GP however they often take self-referrals. After speaking with the member of staff they have advised that you give them a call to discuss a self-referral which they may then be able to help you with. The telephone number for the Southern Area Hub is 01953 609409"

I duly phoned the above number and got a receptionist. After explaining once again what I wanted, she while she went away to consult. When she returned she asked: “are you known to the District Nurses?” I told her I wasn't and she then told me: “Well if you're not known to the District Nurses I'm afraid they are unable to help you”

Arrrrrrrrggggggr! I feel I'm oogly boogly birding. HELPpppppppppppppppppppppppppppppp..............

And yet, in a neighbouring County: Jacqueline Hanratty, Programme Lead for Personal Health Budgets said: “Ipswich & East Suffolk CCG and West Suffolk CCG are fully committed to the implementation and mainstreaming of Personal Health Budgets and Integrated Personal Budgets for its population. The aim is to give people with long-term conditions and disabilities greater choice and control over the healthcare and support they receive.
Mike Llywelyn Cox, 21/08/16.

“It will allow health professionals to work more closely with patients, resulting in improved health outcomes.
“Many local people have already played a key role in developing a framework for personal health budgets in east and west Suffolk and this will continue in the months ahead.”
Over the next 12 months a project board will start to deliver the implementation plan with relevant stakeholder organisations consulted at key decision points.

Postcode lottery or what!

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