Preston carers are an inspiration

07Dec07

Christmas can be lonely, especially for carers. National Carers’ Rights Day on December 7 was a reminder of their difficulties.

 Peter Sullivan, 62, is a full time carer whose job does not stop just for any public holiday. He has the compassion and restrained anger of a man who constantly helps people in need. 

He said: “It is hard to get support at Christmas because other carers want time off.” This, he believes, is made worse by an overall shortage of carers, lack of funding, and an ageing population.

Peter became a full-time carer 13 years ago when his wife was taken ill with spinal thrombosis. She is paralysed below the neck, needs a ventilator to breathe, and requires constant supervision to prevent her choking.

He said: “It was hard to begin with, to get used to it. It was a bit extreme. It was a hell of a shock to know that for the rest of your life you are going to be a carer.”

Employers do not care 

Caring is hard work. Health care professionals provide physiotherapy, and bath her in a special rise/fall bath that he purchased.

For the rest of the day, Peter provides medication, empties catheter bags, and performs suction on her tracheotomy, always remaining in contacting distance.                                         

He sleeps until about 6:50am unless alarm on his wife’s ventilator goes off.          

Hard work                                                   

Peter used to be a benefits worker, but gave up as he often had to stay awake at night to monitor his wife’s ventilator. Like many carers, his employers were not obliged to offer flexible working hours, and they did not.

He said: “It depends on employers being reasonable. Some, especially with young children, are entitled to flexible rights. It can also be a great difficulty getting back to work after a death.”                                   

Because she uses a ventilator, she receives most outside support through the local health authority. But Peter only received this after the Lancashire Evening Post published an article about him, and he is still almost solely responsible for her care.

Personal tragedy

Peter has had a lot of sadness in his life. A normal working class upbringing in  Nelson near Burnley was changed forever when his mother died when he was 15.  He believes, however, that this helped prepare him for the shock he got when his wife fell ill. Peter’s son died of a brain Hemorrhage aged 16.

Peter has another child who lives in London, but she has a baby and cannot help with caring.

Not enough support for carers 

Social services support for carers is means tested and Peter earns too much money to receive it. But like many others, he often has to buy the materials himself that he needs for caring.  

A big problem for many, he said, is that carer’s allowance is only £48 a week. If you receive this, you may not get other income maintenance benefits such as a state pension.

It was once easier for Peter to find support. Women were neglected because it was assumed that they were naturally more capable carers. Only paid men and single women could get home help until the 1989 Carer’s Strategy came about.                                                                                                                                           

He said carers are more valued because of this act, and praised The Princess Royal Trust for its charity work.

Support for carers is decreasing

But he believes support has decreased in the last ten years because of social services cut backs. Primary Care Trusts are allocated less money than the old regional health authorities and less money is now set aside just for carers.

The system is sometimes irrational and inefficient, as there is a strange division based on different budgets. Peter said: “The person from health has to push the wheelchair but social services have to get things off the shelves.”

He also believes people with moderate needs might soon miss out as the local government are planning to downgrade mental disabilities to development disabilities.

Rewarding work

Peter has been an adult carers’ support officer at the Preston Carers’ Centre for seven years and is chairman of a group that advises carers and the people they look after.

He is also a member of a community group that educates students and social workers about caring, and organises outings for young carers. He believes his responsibilities at home forced him to become an expert in the field.  

Peter said: “You can become really isolated and some friends find it too upsetting to visit. My work is a chance to meet others and I’ve been through all the things the other carers have.”

His work is upsetting. Some young carers have drug addicted parents, or had left school and friends behind to look after a relative. One was only five years old, Peter said.

Carers with large families have complained to Peter that they do not get enough support. There is no funding for former carers, but he helps them even though he is not supposed to.                                           

Manager of the Preston Carers’ Centre Ben Blackman said: “There is usually an organisation or charity, but carers are left on their own. Peter’s work puts carers at the front of the queue.”

Preston carers’ centre

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2 Responses to “Preston carers are an inspiration”

  1. 1 nate8steele

    How on earth did you write all that in one hour clive? You are a friggin genius!

  2. 2 ianwaterhouse

    Howell monkey. This appears to be your piece posted on to the web. It resembles a “blog” little. That is all.


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