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The Vacuum - Issue 13 - Wonking with the Community spacer The Vacuum - Issue 13 - Wonking with the Community
Caring in the Community
by Ruth Graham
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Carer: A person who provides a substantial amount of care on a regular basis who is not employed to do so by an agency or organisation. A carer is usually a friend or relative looking after someone who is frail or ill at home.
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Tony Kaluarachchi has cared for his mother, who has Alzheimer's disease, for around 15 years.
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RG: Can you talk a bit about your experience of Care in the Community
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TK: It's a sad thing, having to care for someone. You don't see things like coming. You find yourself in the situation and there are three things you can do walk away from it, bury your head in the sand and continue as if nothing has happened or face it directly and deal with the problem head on and accept it as a reality of existence.
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RG: You've dealt with a lot of different agencies and health professionals what has your overall experience been like?
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TK: On the whole, the experience is good but there are examples of serious shortcomings across virtually all the agencies that I have had to deal with. The worst aspect is that the last thing people care about is the carer. Simple protocols are not followed. For example, if the transport cannot pick up the client for some reason or will arrive substantially late, no effort is made to contact the carer, none whatsoever. If someone like a physiotherapist or other health professional decides to land themselves on your doorstep at their convenience and your inconvenience not a phonecall or a letter is sent to the carer to ask permission to come into the privacy of your home. Other aspects are the high turnover of staff at all levels. For example, if an occupational therapist leaves their job, a new occupational therapist comes in and may or may not decide to review all the cases. Reviewing their cases might mean taking a decision in opposition to a decision made by the previous occupational therapist a decision which may not be taken in agreement with the carer. That could happen five times a year nine times a year depending on the level of turnover. Another dire example would be one social worker not interpretating the legislation regarding the provision of services for clients and their attendants another example, which has recently cropped up in my experience is jury service full time carers are not exempt from jury service. This can cause upheaval and hardship for carers and they should be exempt for this Carers UK would back me up on that. Another oversight is the dire extremes to which you have to go to get a disabled parking space. Another dire extreme the lack of holiday facilities for carers and their dependents across the UK and Ireland. All kinds of carers are affected those who care for young children, those who care for young adults or middle aged adults and those who care for elderly adults across the board there is a dire lack of holiday provision. Another aspect where there is a major lack of facilities is in the provision of last minute respite in the home due to some kind of crisis. Agencies who provide this service such as Crossroads or Extra Care you used to lift the phone and they would go "OK, over this last year you have used 'x' amount of hours so we can or cannot provide you with the service." Now they look at your whole Care in the Community package and if they deem that you are getting a lot of backup then yhou will get virtually no backup from them and they do not take it into account that if you are getting a lot of backup then there is a genuine need for that backup and the fact that you do need a massive amount of backup from the health service means that you are in a dire situation and means that the person you are caring for is in a dire situation, means that you actually need more provision for a break than someone who is caring for someone in a very light way.
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RG: Do you feel happy about the way your Care Package was worked out in the beginning? Were you consulted from the start or have you had to struggle to get the service you and your mother need?
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TK: Yes, I've basically had to tailor the service by fighting the inadequacies of the initial Care Package. Transport being one of the absolute worst nightmares. Lack of transport I should say one of the previous transport companies who took my mother to the day centre was the worst. It was a regular occurrence for them to arrive two or three hours late to bring my mother to the day centre. This was more than inconvenient - she has to be changed regularly because of her incontinence and if she was left sitting in her wheelchair, dressed and ready to go out - she wasn't getting changed she was sitting in her own mess and no one took that into account. They didn't bother to phone me and tell me what the situation was so that I could ring the care manager or social worker and arrange for the support staff to make an extra call. It took a long while and several letters to the head of the health trust to sort that out. Although the situation is much better now there are still times when the transport is unpredictable and I have yet to receive a phone call from any transport company saying "Excuse me, we have broken down .." "excuse me, there has been an accident " "excuse me there was a bomb scare in Belfast" "excuse me my engine just blew up and we will not be there at the designated time.." No one bothers to do that. Just like the 'Quacks' or certain other so called health professionals arriving on your door not bothering to ask their paid for secretaries to make a simple telephone call and arrange it properly.
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RG: You couldn't meet them without a big diary appointment
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TK: Absolutely not.
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RG: Has the whole set up changed much over the years? Has it become more beaurocratic?
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TK: Certain aspects of it have become more beaurocratic and some slightly less. One way in which beaurocracy has increased is in the case of respite for carers. This used to be the responsibility of the Psycho-geriatrician of your local area hospital and you were entitled to two weeks a year. Two weeks a year for someone who looks after someone for fifty two weeks a year, seven days a week is not a lot to ask for. The carer used to phone up the Psycho-geriatrician and say something like "how are you doing? I'm stressed out to hell can I get a week or five days respite." They would either say "yes" or "no" or "maybe in a couple of weeks time". That has gone now. Previously you did not have to go through the social security agency, the local health trust, the social worker, the care manager the whole bang. All you did was ring the hospital and that was it taken care of. Now that has gone. Now there is no provision within the hospitals for respite . There used to be Ward 36 in the RVH and then Meadowlands in Forester Green Hospital. Now it goes out to private care homes who make a fortune and who are increasingly employing people from outside of the UK and Irelandfrom very low paid jobs in third world countries - giving them very low pay here to fill the gap so that they can make more profit for looking after people who should be looked after by the National Health Service which every single person in the UK directly or indirectly pays for. No harm to the staff who come in from overseas. It is not their fault. It is a situation brought about by successive UK governments starting with Maggie Thatcher.
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RG: You are a very assertive person and you have a struggle getting the services you need to care for your mother. What must it be like for an elderly woman, for example, looking after her husband?
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TK: 1. You don't get anything unless you batter doors down. 2. The things that you're supposed to get rarely come unless you know what you are supposed to get. Advice is crucial. You need to look between the lines and not be ashamed to ask for help. It is not submission to the situation, it is not giving up to accept assistance because it comes to the point where one human being cannot deal with it alone without going to the nuthouse themselves. It's different for every person but there will be a time when you need to say "I need help here .. there .. or with that aspect." You should not be afraid to ask for help but the sad thing is that most people are not told what that help is. If you are offered advice, it is very often advice to assist the NHS or the Nursing Homes, not to assist the carer or the person being cared for. I have frequently been asked by so called health professionals "Why don't you just put your mother into a home?" "Why don't we just get rid of every deformed baby?" "Why don't we get rid of every disabled adult?" "Why don't we have a test like a driving test or the 11 bloody plus to test everybody an see if they are still fit to live in society?"
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RG: Caring for someone in their own home is very different from institutional care. Do you think that support staff are trained adequately to deal with individual needs of clients and also with the day to day lives of their families?
spacer
TK: Care staff at all levels have a massive knowledge gap. They all live in ordinary lived in homes but they have a major problem understanding that they are walking into another person's house. I put that down to lack of training. Occupational therapy staff physiotherapy staff they walk into a place and expect it to look like a hospital ward they expect that the facilities should be like those of a hospital ward they want lifts, they want this, they want that they want 'x' amount of space for the staff to work in. That's great if you are working in a hospital ward or in a specially designed facility which has all that in mind but 'Care in the Community' means 'in the community' and 'inthe community' means in the real world. In the real world there are big houses, wee houses, one storey houses and nine storey houses whatever. They don't take that into consideration. There is lack of sensitivity when coming into people's homes small things like never shutting the gate, screaming at eachother from room to room about their experiences the day before doing silly things dangerous things, in the course of their caring not checking the water temperature of a shower, presuming that it was preset at the correct level instead of checking it every time. Not understanding that someone frail four and a half stone and suffering from advanced Alzheimer's disease there is virtually no fat on their body and they will be scalded. Safety belts on wheelchairs.
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RG: For anybody starting out caring is there any information you could give them on advice centers or organisations to contact for support?
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TK: The first places to go are the Carers Advice Centre or Carers UK. They would be able to tell you all your rights. Unfortunately the Carer's premium is just £25 per week the state will give you, on top of basic income support £25 for spending 7 days a week looking after someone. They give a civil servant £12,000 or whatever it is a year, so do the maths there. There are other agencies which are more specific like the Alzheimer's Disease Society, Help The Aged or Disability Action. The best thing is to get someone from one of these agencies to write down all of your needs very often people don't realize they are caring till years later. They don't realise that reminding someone to wash themselves, making them meals on a regular basis, cleaning up after them, etc is caring for someone. They think it is just an extension of normal family life but there comes a point when they realise it is not normal anymore Carer: A person who provides a substantial amount of care on a regular basis who is not employed to do so by an agency or organisation. A carer is usually a friend or relative looking after someone who is frail or ill at home.
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Tony Kaluarachchi has cared for his mother, who has Alzheimer's disease, for around 15 years.
spacer
RG: Can you talk a bit about your experience of Care in the Community
spacer
TK: It's a sad thing, having to care for someone. You don't see things like coming. You find yourself in the situation and there are three things you can do walk away from it, bury your head in the sand and continue as if nothing has happened or face it directly and deal with the problem head on and accept it as a reality of existence.
spacer
RG: You've dealt with a lot of different agencies and health professionals what has your overall experience been like?
spacer
TK: On the whole, the experience is good but there are examples of serious shortcomings across virtually all the agencies that I have had to deal with. The worst aspect is that the last thing people care about is the carer. Simple protocols are not followed. For example, if the transport cannot pick up the client for some reason or will arrive substantially late, no effort is made to contact the carer, none whatsoever. If someone like a physiotherapist or other health professional decides to land themselves on your doorstep at their convenience and your inconvenience not a phonecall or a letter is sent to the carer to ask permission to come into the privacy of your home. Other aspects are the high turnover of staff at all levels. For example, if an occupational therapist leaves their job, a new occupational therapist comes in and may or may not decide to review all the cases. Reviewing their cases might mean taking a decision in opposition to a decision made by the previous occupational therapist a decision which may not be taken in agreement with the carer. That could happen five times a year nine times a year depending on the level of turnover. Another dire example would be one social worker not interpretating the legislation regarding the provision of services for clients and their attendants another example, which has recently cropped up in my experience is jury service full time carers are not exempt from jury service. This can cause upheaval and hardship for carers and they should be exempt for this Carers UK would back me up on that. Another oversight is the dire extremes to which you have to go to get a disabled parking space. Another dire extreme the lack of holiday facilities for carers and their dependents across the UK and Ireland. All kinds of carers are affected those who care for young children, those who care for young adults or middle aged adults and those who care for elderly adults across the board there is a dire lack of holiday provision. Another aspect where there is a major lack of facilities is in the provision of last minute respite in the home due to some kind of crisis. Agencies who provide this service such as Crossroads or Extra Care you used to lift the phone and they would go "OK, over this last year you have used 'x' amount of hours so we can or cannot provide you with the service." Now they look at your whole Care in the Community package and if they deem that you are getting a lot of backup then yhou will get virtually no backup from them and they do not take it into account that if you are getting a lot of backup then there is a genuine need for that backup and the fact that you do need a massive amount of backup from the health service means that you are in a dire situation and means that the person you are caring for is in a dire situation, means that you actually need more provision for a break than someone who is caring for someone in a very light way.
spacer
RG: Do you feel happy about the way your Care Package was worked out in the beginning? Were you consulted from the start or have you had to struggle to get the service you and your mother need?
spacer
TK: Yes, I've basically had to tailor the service by fighting the inadequacies of the initial Care Package. Transport being one of the absolute worst nightmares. Lack of transport I should say one of the previous transport companies who took my mother to the day centre was the worst. It was a regular occurrence for them to arrive two or three hours late to bring my mother to the day centre. This was more than inconvenient - she has to be changed regularly because of her incontinence and if she was left sitting in her wheelchair, dressed and ready to go out - she wasn't getting changed she was sitting in her own mess and no one took that into account. They didn't bother to phone me and tell me what the situation was so that I could ring the care manager or social worker and arrange for the support staff to make an extra call. It took a long while and several letters to the head of the health trust to sort that out. Although the situation is much better now there are still times when the transport is unpredictable and I have yet to receive a phone call from any transport company saying "Excuse me, we have broken down .." "excuse me, there has been an accident " "excuse me there was a bomb scare in Belfast" "excuse me my engine just blew up and we will not be there at the designated time.." No one bothers to do that. Just like the 'Quacks' or certain other so called health professionals arriving on your door not bothering to ask their paid for secretaries to make a simple telephone call and arrange it properly.
spacer
RG: You couldn't meet them without a big diary appointment
spacer
TK: Absolutely not.
spacer
RG: Has the whole set up changed much over the years? Has it become more beaurocratic?
spacer
TK: Certain aspects of it have become more beaurocratic and some slightly less. One way in which beaurocracy has increased is in the case of respite for carers. This used to be the responsibility of the Psycho-geriatrician of your local area hospital and you were entitled to two weeks a year. Two weeks a year for someone who looks after someone for fifty two weeks a year, seven days a week is not a lot to ask for. The carer used to phone up the Psycho-geriatrician and say something like "how are you doing? I'm stressed out to hell can I get a week or five days respite." They would either say "yes" or "no" or "maybe in a couple of weeks time". That has gone now. Previously you did not have to go through the social security agency, the local health trust, the social worker, the care manager the whole bang. All you did was ring the hospital and that was it taken care of. Now that has gone. Now there is no provision within the hospitals for respite . There used to be Ward 36 in the RVH and then Meadowlands in Forester Green Hospital. Now it goes out to private care homes who make a fortune and who are increasingly employing people from outside of the UK and Irelandfrom very low paid jobs in third world countries - giving them very low pay here to fill the gap so that they can make more profit for looking after people who should be looked after by the National Health Service which every single person in the UK directly or indirectly pays for. No harm to the staff who come in from overseas. It is not their fault. It is a situation brought about by successive UK governments starting with Maggie Thatcher.
spacer
RG: You are a very assertive person and you have a struggle getting the services you need to care for your mother. What must it be like for an elderly woman, for example, looking after her husband?
spacer
TK: 1. You don't get anything unless you batter doors down. 2. The things that you're supposed to get rarely come unless you know what you are supposed to get. Advice is crucial. You need to look between the lines and not be ashamed to ask for help. It is not submission to the situation, it is not giving up to accept assistance because it comes to the point where one human being cannot deal with it alone without going to the nuthouse themselves. It's different for every person but there will be a time when you need to say "I need help here .. there .. or with that aspect." You should not be afraid to ask for help but the sad thing is that most people are not told what that help is. If you are offered advice, it is very often advice to assist the NHS or the Nursing Homes, not to assist the carer or the person being cared for. I have frequently been asked by so called health professionals "Why don't you just put your mother into a home?" "Why don't we just get rid of every deformed baby?" "Why don't we get rid of every disabled adult?" "Why don't we have a test like a driving test or the 11 bloody plus to test everybody an see if they are still fit to live in society?"
spacer
RG: Caring for someone in their own home is very different from institutional care. Do you think that support staff are trained adequately to deal with individual needs of clients and also with the day to day lives of their families?
spacer
TK: Care staff at all levels have a massive knowledge gap. They all live in ordinary lived in homes but they have a major problem understanding that they are walking into another person's house. I put that down to lack of training. Occupational therapy staff physiotherapy staff they walk into a place and expect it to look like a hospital ward they expect that the facilities should be like those of a hospital ward they want lifts, they want this, they want that they want 'x' amount of space for the staff to work in. That's great if you are working in a hospital ward or in a specially designed facility which has all that in mind but 'Care in the Community' means 'in the community' and 'in the community' means in the real world. In the real world there are big houses, wee houses, one storey houses and nine storey houses whatever. They don't take that into consideration. There is lack of sensitivity when coming into people's homes small things like never shutting the gate, screaming at eachother from room to room about their experiences the day before doing silly things dangerous things, in the course of their caring not checking the water temperature of a shower, presuming that it was preset at the correct level instead of checking it every time. Not understanding that someone frail four and a half stone and suffering from advanced Alzheimer's disease there is virtually no fat on their body and they will be scalded. Safety belts on wheelchairs.
spacer
RG: For anybody starting out caring is there any information you could give them on advice centers or organisations to contact for support?
spacer
TK: The first places to go are the Carers Advice Centre or Carers UK. They would be able to tell you all your rights. Unfortunately the Carer's premium is just £25 per week the state will give you, on top of basic income support £25 for spending 7 days a week looking after someone. They give a civil servant £12,000 or whatever it is a year, so do the maths there. There are other agencies which are more specific like the Alzheimer's Disease Society, Help The Aged or Disability Action. The best thing is to get someone from one of these agencies to write down all of your needs very often people don't realize they are caring till years later. They don't realise that reminding someone to wash themselves, making them meals on a regular basis, cleaning up after them, etc is caring for someone. They think it is just an extension of normal family life but there comes a point when they realise it is not normal anymore
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