[Merged]Carers For Sick And Elderly: Petitions & Campaign

Stephen Johnson · 19-05-2007, 12:21

HI,

I'm new to the group. My name is Stephen Johnson and I live in Cheshire. I look after my 78 year old mother who has chronic arthritis, epilepsy, emphysema, history of 3 strokes, 1 heart attack and is now becoming slightly dementured.

On top of that, my brother Rod (aged 53) had a massive Brain Haemorrhage on 24th May, 2005. As a result of this, he has been left paralysed, epileptic, doubly incontinent, peg tube in his stomach for fluids, constant pain due to Thalamic Pain Syndrome, suicidal, constant skin irritation and is on over 15 medications a day. He has also had many infections including MRSA (list not exhaustive). He is self funding in a Private Nursing Home as he has been refused Fully Funded NHS Continuing Care because Central and Eastern Cheshire Primary Care Trust seem to think that his main need is a social need and not a nursing need. What absolute rubbish.

I am now fighting the NHS to get the funding he and many others should be getting under the law of the land. This problem will not only affect the person with the disability or illness but also the family unit. If you end up in the situation of having to fight this fight, it will probably destroy your whole family one way or another. This could happen to any one of us at some time in our lives.

I have raised a lot of awareness and have battled with the Primary Care Trust for almost a year. It is the most stressful thing I have ever had to do in my 52 years of life. Not only do I have to fight for his health issues but also funding, and on top of that I have to deal with the legal and financial issues. The PCT have used so many underhand tricks, you would not believe me if I told you. I started a website www.continuingcarecampaign.info which pretty much tells the story up to last November. A lot has happened since.

I have also started a petition which can be seen at: http://petitions.pm.gov.uk/Continuing-Care/

I would be grateful if anyone reading this would sign up and get their friends and family etc. to do the same.

I think eventually I will have to fight for funding not only for my brother but my mother as well and this problem will affect most people at some time in their life.

Kind Regards,

Stephen (Johnson).

"The pessimist sees difficulty in every opportunity. The optimist sees opportunity in every difficulty" (Winston Churchill).

monkey2468 · 19-05-2007, 12:56

Signed petition.

homealone · 19-05-2007, 13:27

Quote:

Originally Posted by monkey2468

Signed petition.

me too ...

Nedkelly · 19-05-2007, 13:52

Done

good luck

jkat · 19-05-2007, 14:19

totaly agree with u stephen will urge my family to sign as well. thanks for the petition and good luck.

joglynne · 19-05-2007, 15:21

John and I have both signed the petition.

We were in in the same boat with Cheshire Council a few years back. We were lucky and won our appeals but the process nearly did us in.

Good luck with your campaign.

Jo

jellybaby · 19-05-2007, 15:23

Signed

budwieser · 19-05-2007, 15:55

Signed and

hope you enjoy your time with us.

**Maggy J** · 19-05-2007, 17:56

Signed as unfortunately this is a common problem all over the UK.

peanutkp · 19-05-2007, 20:45

Signed, and good luck with your campaign.

Stephen Johnson · 19-05-2007, 21:34

Thanks to those who have replied. My brother has now been admitted to hospital after having 300 seizures plus in a 6 hour period. He is 54 so it probably doesn't matter. He would be better off being abducted then someone might think about the fact that there are millions of infirm and elderly people that are unlawfully mistreated by our own government. They deserve better.

Kind Regards,

Stephen (Johnson).

http://petitions.pm.gov.uk/Continuing-Care/

**Mick** · 19-05-2007, 21:52

Quote:

Originally Posted by Stephen Johnson

Thanks to those who have replied. My brother has now been admitted to hospital after having 300 seizures plus in a 6 hour period. He is 54 so it probably doesn't matter. He would be better off being abducted then someone might think about the fact that there are millions of infirm and elderly people that are unlawfully mistreated by our own government. They deserve better.

Kind Regards,

Stephen (Johnson).

http://petitions.pm.gov.uk/Continuing-Care/

I wouldn't put the age '54' in the same bracket with *elderly*.

I'm sorry but as much as I sympathise with your brothers health issues - you really cannot compare this to the abduction of a young child. One is a natural course of 'life' that was unfortunately dealt to your brother and I am sorry that this is the case, but an abduction is a serious and sickening crime.

**Maggy J** · 19-05-2007, 23:26

Quote:

Originally Posted by Mick

I wouldn't put the age '54' in the same bracket with *elderly*.

I'm sorry but as much as I sympathise with your brothers health issues - you really cannot compare this to the abduction of a young child. One is a natural course of 'life' that was unfortunately dealt to your brother and I am sorry that this is the case, but an abduction is a serious and sickening crime.

Maybe so Mick but the treatment that is being denied to the fiscally careful older members of society is theirs by right.They paid for it with their contributions but due to precise careful wording it is being denied to them.IMHO is is tantamount to a crime being committed by a lot of our NHS care trusts who are using semantics to avoid spending money..The irony in many cases is that those that are imprudent with their finances get those same treatments for nothing.

Stephen Johnson · 20-05-2007, 08:55

Carer launches petition for more help

KIM BRISCOE
16 May 2007 09:20

A carer who runs a national support website is calling on people in the city to back a campaign for long-term care. Wendy Maxwell set up the website Chill4Us nearly two years ago and it now has hundreds of members across the UK logging on for support every day.

Now Mrs Maxwell, from Hellesdon, who has cared for her son for more than six years, is asking people to sign up to an online petition created by one of the website's members who became frustrated at the lack of care offered by the NHS for people with long-term illness.

Stephen Johnson, 52, cares for his 78-year-old mother who has chronic arthritis, emphysema, epilepsy, and has had three strokes and a heart attack.

His brother Rod, 53, is funding himself in a private nursing home because he has been refused fully funded NHS continuing care.

Rod had a massive brain haemorrhage in 2005 which left him paralysed, doubly incontinent, with peg tube in his stomach for fluids, and in constant pain due to thalamic pain syndrome.

His local primary care trust argues he does not need the continuing care, saying he is stable and his is a social need rather than a health need.

His brother said: “Tony Blair said at the Labour Party conference in 1997 that he didn't want his children brought up in a country where pensioners had to sell their homes to pay for long-term care. Since then about 700,000 homes have been sold to pay for care.

“This applies to sick people of all ages. These people have paid taxes and national insurance all their lives, then suddenly they get taxed again when they become ill by funding their own long-term care. What an absolute disgrace.

“I'm asking people to sign the petition because this could affect anybody and at any age.”

The e-petition, on the Downing Street website, calls for the NHS to fund long-term continuing care of very ill and elderly people.

Mrs Maxwell, 65, is disabled and has been a carer for more than six years. Knowing how lonely and isolating it can be to be a carer, she set up the website to offer support and friendship to people all over the country.

She said: “This issue is a hidden crisis across the UK. Many carers either receive inappropriate services or indeed none at all.

“We have members who have had to sell their homes to pay for funding for care. When the funding runs out very often the person will have to move from the residential home to a cheaper one and this can cause terrible stress or even result in death.”

Norwich North MP Ian Gibson said: “A lot of people have to go into care homes and I'm not very proud of the fact that they have to sell their homes to do it. I think there should be some help from social services - but they don't have the funds to cope with an ageing population.”

The Chill4Us website is at www.chill4us.com. The petition can be signed at http://petitions.pm.gov.uk/Continuing-Care/

Are you fighting to get the health care you need? Contact reporter Kim Briscoe on 01603 772419 or email kim.briscoe@archant.co.uk

Direct link: http://www.eveningnews24.co.uk/conte...&itemid=NOED16 May 2007 09:21:35:183

Kind Reards,

Stephen (Johnson).

Osem · 20-05-2007, 09:05

This has been a scandal for a very long time. Care in the community is really about cost cutting and the most vulnerable are almost by definition those least able to fight for a fair deal. Likewise the trend towards the inclusion of special needs children into mainstream environments in which they don't have the required support.

Yep - Blair's caring government really has redefined the term hasn't it.