Saturday, 5 January 2013

Human Rights & #Caring

The British Institute of Human Rights  in association with N:Compass funded by Equality & Human Rights Commission has produced a leaflet on the Human Rights of Carers and those they care for :-

Having read it I realised that both my Hubby's and My rights had been trampled on time and time again since he had become sick in 2007.

Lets start with Article 8 : Right to respect for private and family life home and correspondence.

- being able to maintain and establish relationships - well lets see how well authorities have done on that score, I have to be with OH 24/7 as leaving him on his own is dangerous, I cant even take a shower without listening out for him asking for help. We have food delivered to our home or else we would starve. I am a prisoner in my own home. He has been under the NHS continuing Care Regime since 2009 where care workers are supposed to be provided. We have had provision for various reasons for about 8 months out of the last 39 months, 25% . Last year was especially bad as at the turn of the year it was known that my father was ailing with lung cancer, I spent 3 months begging social services under respite for me to provide ad hoc cover so that I could visit him before he died, none was provided, he died on May 7th I was not even given any cover so that I go to his funeral. This happened in in 2010 as well, as my Nan died, who I was very close to, again no cover provided so that I could go to her funeral. My mother is in her 70's I have not seen her for over a year so I guess that will be the next family funeral I will miss. My eldest brother is severely LD I haven't seen him in 3 years.

We had a phone call from our care coordinator last night stating that care provision for OH is being supplied on the basis that I need to go back to work, not on the basis that he needs care provision. The implication being that if I do not find work I will be expected to carry on my 24/7 duties. I have written papers to the people in charge previously with risk assessments showing what  potential risks they are taking with my health and that of my OH. But no one gives a shit or believes you until someone reaches crisis point.

same goes for rest of the list -
being able to access medical treatment - been trying to get a MOT life-scan for last 6 months as things do not feel right in my worn out body.
respecting physical and mental well being - I love cycling , it used to keep me sane and fit, now I am confined to trying make do with an indoor Wii cycle which is not the same. My weight has become a problem as I can not exercise or get enough sleep. I have reoccurring minor neck / back / knee problems because of all the lifting I have to do. I have not had more than 3 hours sleep straight for 4 years.
respecting right to make choices - my life is ruled by the times help is needed to be given to my OH, I cant just decide to have a lie in, go out shopping, cycling etc I have not been able to earn a living for the last 4 years making financial restraints on a very expensive illness where OH needs suitable housing, transport and equipment.
being able to participate in community life - I do what I can via the computer as now with this blog, but meet real people, go to local meetings , IMPOSSIBLE.

Article 3: Right to be free from inhumane and degrading treatment

I would argue that many of the things listed above constituted inhumane treatment. I am being imprisoned in my own home,(which is also an Article 5: Right to Liberty issue )  by the authorities that do not seem to care about my freedom. I am suffering extreme cruelty, constantly being pushed to limits of human physical and mental capabilities. What I have been put through is akin to torture, sleep deprivation, lack of human contact, hard physical labour, prisoners get treated better.

Article 2 : Right to life

Take reasonable steps to protect life, I may be sort of okay at the moment, but what has this experience done to shorten my life.

Article 14: Right not to be discriminated against

As a carer of a severely disabled person I have been discriminated against. I am ignored because the authorities know I can not get out to protest against my and my Hubby's treatment face to face. Hence why in July 2010 I went on a short hunger strike as the only protest I could make from my home. I have been at times unable to look at possible suitable housing because no one was available to look after OH who was too ill to attend, no quarter was given. Hubby is constantly discriminated against directly, like how difficult it is to get a suitable disability car for him at a price we can afford, care-workers, housing, shopping, travel, access to treatment he has had operations cancelled because of his disabilities and age.

I am pretty sure there are other parts of the Human Rights articles that have been affected as well, Article 11 The Right of assembly and Association, Article 4 The Right to be free from Slavery or forced labour seems pertinent.

Life as a carer, fun fun, fun, NOT...

I’m not Superwoman,  just a Caring Wife.

Just a note to make a wares, 
just in case someone cares. 

Every time he cries with the pain, shouts and blames me, who is it in the firing line, is
it superwoman ? oh no its just me.

Every time suicide is in the air, his pain he can not bear, who is there, is it
superwoman ? oh no its just me.

Every time he angrily asks, why the medicos are not doing their tasks, who is there, is
it superwoman? oh no its just me.

Every time his feet fly off his chair, spasming in mid air, who is there, is it
superwoman ? oh no its just me.

Every third day who is there to collect the sh**, not a wife’s normal bit, is it
superwoman ? oh no its just me.

Every six hours to collect the p***, without a miss, is it superwoman? oh no its just me.

Every time he needs shifting who is doing the lifting, is it superwoman? oh no its just

Every time he passes out, with blood pressure no doubt, is it superwoman? oh no its
just me.

Every time a new drug supply, who is it to apply, is it superwoman? oh no its just me.

Every time we ask for help and the medicos whelp, who is there, is it superwoman?


  1. I sometimes wonder why Human Rights are spouted by prisoners who have broken those rights of their fellow humans.

    I sometimes wonder why Human Rights are spouted by our Government sending our young to support people abroad who have their rights suppressed or broken.

    I sometimes wonder why Human Rights are spouted by our sick and disabled or their carers no one listens apart from other sick/disabled/carers!

  2. Hi Angela,

    My name is Josh Glancy and I'm a reporter at The Sunday Times. I've read about your extraordinary story and I'm interested in talking to you about your experiences caring for your husband and how the NHS may have let you down at times. Do get in touch if you want and I can explain in a bit more detail. I'm on 0207 782 5507 or

    Many thanks,


  3. Hi Angela,

    I have a quick question for you regarding your blog, but I couldn't find your contact information. Do you think you could send me an email whenever you get a chance?