Author Topic: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?  (Read 9450 times)

Mark McConway

  • **
  • Posts: 73
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Hi Everyone,

Having read a number of posts now about how some people have been adversely treated in relation to pursuing benefits etc, I thought it might be worth mentioning that, over recent years, the definition of what constitutes 'a disability' for the purpose of protection against discrimination under the Equality Act of 2010 is now much wider.  I am not a lawyer but it does strike me that the definition may encompass someone dealing with a diagnosis of Amyloidosis. 

Quoting from the government's own guidance (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/85010/disability-definition.pdf)

Main elements of the definition of disability
A1. The Act defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantiaand long-term adverse effect on his or her ability to carry out normalday-to-day activities (S6(1)).
A2. This means that, in general:
• the person must have an impairment that is either physical ormental (see paragraphs A3 to A8);
• the impairment must have adverse effects which are substantial(see Section B);
• the substantial adverse effects must be long-term (see Section C);and
• the long-term substantial adverse effects must be effects on normal day-to-day activities (see Section D).

It goes on to say that...
"A disability can arise from a wide range of impairments which can be:
• sensory impairments, such as those affecting sight or hearing;
• impairments with fluctuating or recurring effects such as rheumatoid arthritis, myalgic encephalitis (ME), chronic fatigue
syndrome (CFS), fibromyalgia, depression and epilepsy;
• progressive, such as motor neurone disease, muscular dystrophy,and forms of dementia;
• auto-immune conditions such as systemic lupus erythematosis(SLE);
organ specific, including respiratory conditions, such as asthma,
and cardiovascular diseases, including thrombosis, stroke and heart disease



I've highlighted the last section as I believe that this is key to the inclusion of an amyloidosis patient.

Why does it matter?  It matters if you believe that you are being unfairly treated as a direct (or in some cases indirect) consequence of being disabled.  In relation to benefit entitlement, it could mean that - depending on individual circumstances - one could make the argument that a decision to withhold benefits could be unlawful under the Equality Act of 2010.  In cases relating to cancer and HIV for example, it was held that protection started on diagnosis - not on the onset of debilitating symptoms.  This could be significant for Amyloidosis patients trying to get benefit entitlement backdated.

As Amyloidosis is rare, I would doubt that many people suffering with it have made the connection with the Equality Act.
If anyone reading this is a lawyer, or knows one, it might be interesting to hear her\his view on what I've outlined.  My own connection with this stems from my 'pre-amyloidosis'  work in advising businesses on their responsibilities to make their premises more accessible to people with disabilities.  I picked up a bit of the legislative background along the way.


Lesley

  • ***
  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #1 on: February 23, 2015, 11:54:51 am »
Thank you Mark - that is very interesting. I am not sure how my particular assessment went as they say it can take up to 6-8 weeks but I will appeal if necessary, armed with the information you have supplied.

At the moment, I feel the assessment itself has already rocked my unsteady mental and physical state. Indeed, if it had been today my assessment, I would not have been able to 'perform' half of the things they asked me as my right side hurts internally (which it has pre and post SCT) and I have pain in my lower leg and back - I guess its the Amy in the bones and spine.  I just feel more 'down' after the assessment as it highlighted to me the whole of the past two years which I didn't particularly wish to discuss with a strange who cared not a jot how it would make me feel.

Thanks for the info again

Lesley

patpinchin

  • *****
  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #2 on: February 26, 2015, 09:22:02 am »
I wonder if those who conduct such interviews are trained to be objective and distant? They seem to have their own agenda which may or may not suit an individual applicant's needs.....probably in the form of a tick box questionnaire with no room for deviation whatever the circumstances. Unfortunately within bureaucracy there seems to be a prevalence of "one size fits all".
Pat

Lesley

  • ***
  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #3 on: March 05, 2015, 11:23:38 am »
Morning All

I went to the MRI for a check up yesterday and saw my Nurse Pippa. I explained my saga re PIP. Pippa told me that she could refer me to Macmillan who would help assist filling in these forms and would also assist if I needed to appeal.

You may all be aware of this already but if not, hopefully it could help alleviate any anxiety you may have.

Lesley

Lesley

  • ***
  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #4 on: March 27, 2015, 12:49:46 pm »
I think I have been awarded PIP!

I have a letter that says 'please keep this as proof of your entitlement to benefit'
Then goes on to tell me what the rate is from 23rd September 2013 to December 2015!
All a bit typical government letter. Anyway if anything else untoward happens, I will keep you all posted!
Thanks for letting me moan about this - it really was very upsetting and harrowing, particularly under the circumstances of getting your head round such a diagnosis/prognosis in the first place.
Lesley
x

Miriam Vered

  • Administrator
  • *****
  • Posts: 554
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #5 on: March 27, 2015, 01:08:35 pm »
That's great Lesley. I'm so glad to hear it.

patpinchin

  • *****
  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #6 on: March 27, 2015, 01:29:23 pm »
Me too Lesley. Must be such a great relief. Xx
Pat

Elliei21@me.com

  • *
  • Posts: 35
  • Reason for joining: A patient
  • Diagnosed: July 2010
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #7 on: March 28, 2015, 12:42:04 am »
Great news Lesley
So pleased you more than deserve it and should be given it after all you went through with your assessment too, let's hope people are becoming more aware of the severity of this illness.
Have a good weekend.
Regards EllieX

Lesley

  • ***
  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #8 on: March 29, 2015, 10:23:33 am »
Thank u Miriam,pat and Ellie. I know more than anything money doesn't buy you happiness but this will allow me to carry on seeing my lovely Macmillan lady privately ( I had six free sessions via Macmillan. ) Jackie ( reflexology) has proved to b such a big prop to me.
I have so many comfort blankets I'm like a baby!
Lesley
X

Elliei21@me.com

  • *
  • Posts: 35
  • Reason for joining: A patient
  • Diagnosed: July 2010
Re: Could the Equality Act 2010 be of Benefit to Amyloidosis Patients?
« Reply #9 on: April 02, 2015, 07:23:39 pm »
Hi Lesley
Definitely reflexology is a great help and we all need a lot of TLC especially as Amy sufferers, and I think we should all have nice Easter treats this weekend to clever ate Easter, hope you have. A lovely Easter and have a nice relaxing long weekend too, I have one more week of velcade injections left and then I'm having a break can't wait!!! As I can't taste my chocolate at the moment aha
Take care EllieXX