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 :-  http://bihr.org.uk/sites/default/files/BIHR%20Pocket%20Guide%20for%20Carers.pdf

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

me.

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?

OH NO, WHY IS IT JUST ME?   

Accessible Housing: Back Home, but isn't our home.

We returned "home" on the 20th September, 3 months to the day that Hubby was admitted to hospital. I put "home" in inverted commas as we have never made this place our home. It is the place where we sleep, eat, the place, the authorities have hidden us away in the community, so that they can forget we exist. My usual mantra, Care in the Community = no Care at all.

I have resumed my search for accessible housing. The council list never seems to have anything suitable, the rooms are always too small to accommodate safely the equipment we need to use. We return to the stench of cigarette smoke from our neighbour which has permeated into all our fabrics in our flat. The Liaison Nurse from Stanmore, visited  last week and tells me her clothes stank of it on her return home. I wonder what is that doing to Hubby's already fragile breathing, and also to me the daughter of father who has recently died of lung cancer. The Housing Association has put a lemon fragrance air freshener in the hall way, but it doesn't eat the toxic smoke that is infecting and assaulting our lungs. Hubby has been trying to shelter his fragile back by using his electric chair even though it is very uncomfortable. We tried to use the new manual one supplied by the NHS but it is too big to use in our tiny 2 bed first floor flat. The bedroom door was the worse obstacle as it only just squeezed through. So it has been stuffed in the bathroom with the hoist we rarely use because of lack of space and carpets.

Hubby has now hurt his right ankle banging into the many barriers to his progress in this flat. 

So rather than fester on all of this I write a letter to the council setting out why they need to move us to more suitable accessible accommodation . Not heard anything from them yet which either means the letter has gone in the bin or maybe someone might review our case again and help us find somewhere more suitable. 

There is another dimension to our unsuitable living arrangements in that looking after Hubby using careworkers is near impossible as they don't have access all around his bed to use sliding sheets and the like. Using a hoist will also be difficult for them as well, because of the lack of space and the carpets.

This causes a vicious circle as without careworkers I can not get back to work to stand a chance of providing a suitable home for ourselves. This is downward spiral that the politicians don't seem to understand, it takes someone giving you a break in one area to ease up a lot of the other challenges. 

Our case highlights again the need for integrated services for the disabled. Medical Need+Housing+On going Care.  

Getting back to politicians, I was very dismayed to read about proposals to stop housing benefit to the under 25. I write here my own example of how having the right to this as a 17 year old, helped me get away from a dysfunctional family life, started my career and saved my sanity.

I tried to stay on in the sixth form at school , but found out that due to my family caring duties, the strain of studying for my O'Levels I was burnt out and could not devote enough energy to my studies. I therefore made the decision to look for a job, which I was very lucky to get as an entry clerical post in the civil service in a benefit office in a town 20 miles away. To grown up readers with cars that does not sound a long way away, but to me that meant getting up at the crack of dawn travelling by train to start work at 8am. The train fare was extremely expensive, so I used to cycle to work as many times a week as I could, but soon realised that although I loved cycling it was not conducive to arriving at work fresh and ready for a days work. By the time I had paid my fares, food at work and given most of the rest over to my struggling family, I had very little to show for my efforts. I then decided that for my own health and well being I had to make a break of it and live in the town where I worked. I saved up enough for a deposit and with the help of my future husband moved to a bedsit in the town, just up the road from Margaret Thatchers fathers shop in Grantham. I had housing benefit help with the rent, but £60 per week civil service pay didn't go very far after paying  utilities, so I usually survived on £15-20 (we are talking of the late 1980's) for food plus extra vegetables my hubby gave me. Even though money was very tight I was free from my dysfunctional family dragging me down, free to get my head around what I was going to do for the rest of my life.  

M.P. Tebbitt told the youth of my time to stop whining and get on your bikes, so I got onmybiketoo .

So I beg politicians of today heed my story , do not stop the mobility of our under 25's they need more than ever today to leave their homes to find work, Housing Benefit will be an enabler for them to do this.