18/08/2011

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:00:10. > :00:14.behaviour. Thank you both very much Tonight on Newsnight Scotland: In

:00:14. > :00:17.the second in our series looking at the cost of care, we'll look at the

:00:17. > :00:21.ethics and choices that we face - who should get care, who shouldn't

:00:21. > :00:25.- and have we even begun to come to terms with the scale of the issues

:00:25. > :00:28.that we have to confront? Good evening. Who deserves to

:00:28. > :00:31.receive the full support of the state when it comes to social and

:00:31. > :00:34.healthcare? Who makes those decisions and why? Is there such a

:00:34. > :00:37.thing as the deserving and the undeserving? Should the family,

:00:37. > :00:40.rather than the Government, be the main provider of care, regardless

:00:40. > :00:44.of how difficult and painful that may be? All questions which experts

:00:44. > :00:54.in the area say we need to face now but are we facing them? We'll

:00:54. > :00:58.debate that in a moment, but first here's Ian Hamilton.

:00:58. > :01:04.I feel my son has become a commodity and a value has been put

:01:04. > :01:09.on his head that shouldn't be there. I don't think it is just about

:01:09. > :01:13.money. Care can be about getting the job done or it can be about

:01:13. > :01:17.affording a value to the individual. I think we are moving into pretty

:01:17. > :01:23.difficult times. Resources are not increasing at the rate they have

:01:23. > :01:33.increased in the past. Therefore, potentially conflicts will be

:01:33. > :01:40.

:01:40. > :01:50.That is a nice one. You don't want that one? What about this one?

:01:50. > :01:53.

:01:53. > :01:57.Jonathan is a young man who has multiple and profound learning and

:01:57. > :02:03.sensory disabilities. He is double incontinent, he is registered blind,

:02:03. > :02:07.he has epilepsy, a kidney disorder and he needs an adult to supervise

:02:07. > :02:13.him 24 hours ago. Jonathan is 17 and is about to leave school. His

:02:13. > :02:17.parents know that they are going to have to find enough cash to provide

:02:17. > :02:21.Jonathan's care needs for the rest of his life. You did four. Almost

:02:21. > :02:25.two decades of dealing with professionals has taught me

:02:25. > :02:30.everything has a value, everything seems to cost and I feel that there

:02:30. > :02:36.is a price put on Jonathan's head all the time for every service that

:02:36. > :02:41.he needs access to. I have got to the point where I'm slightly being

:02:41. > :02:44.made to feel guilty for asking for help.Ethically, in my head, I know

:02:44. > :02:48.that is wrong. It's been brow- beaten all the time by people

:02:48. > :02:53.saying, "Do you know this costs, do you know there is a waiting list

:02:53. > :03:02.for this service?" That is a sad indictment on how professionals can

:03:02. > :03:12.bear families down. You ready? Let's count four. Too many!

:03:12. > :03:17.

:03:17. > :03:22.Jonathan, you have gone too far Policymakers are going to have some

:03:22. > :03:25.tough decisions about who gets and who doesn't get care and what kind

:03:25. > :03:29.of care that will be. Those decisions will have to be made

:03:29. > :03:35.under the umbrella of social work, health and human rights legislation.

:03:35. > :03:40.If you look at the cost of care, an older person is about �500 a week.

:03:40. > :03:45.If you look at what we pay for children in children's home, it is

:03:45. > :03:49.�2,500 a week. I would hate to think that is - I'm all for us

:03:49. > :03:54.spending money on good childcare, believe me, that is equally

:03:54. > :03:59.important. We should value our older people enough to say we will

:03:59. > :04:05.also as a society make sure that people who have contributed

:04:05. > :04:09.throughout their lives are well cared for in their older age.

:04:09. > :04:13.is a group of people with a learning disability rehearsing

:04:13. > :04:18.their next play. It is this kind of activity that could be threatened

:04:18. > :04:24.in the future. I'm your dad and I'm telling you, you are getting off

:04:24. > :04:29.that computer. On you go. I will have to go then! There is also a

:04:29. > :04:33.concern that some services may shift from disabled people to an

:04:33. > :04:37.ever-growing elderly population. There is a risk I think,

:04:37. > :04:43.policymakers and so on are overwhelmed by the awareness of the

:04:43. > :04:49.need to meet the increasing demand and expectation for the care of

:04:49. > :04:52.older people. In that situation adults who need care are squeezed,

:04:52. > :04:58.the perception is that people with learning disabilities have had

:04:58. > :05:03.quite a large slice of the care budget. I think it's mistaken to

:05:03. > :05:12.think of these groups as in competition to one another. Let's

:05:12. > :05:19.do this one perfect. Resources are always scarce. There is always

:05:19. > :05:25.going to be some level of conflict. There's also the issue of

:05:25. > :05:27.preventative care. So there are bodies that would like to have the

:05:27. > :05:32.Government spend more on preventative measures but of course

:05:32. > :05:39.if you have a fixed budget, that might be at the cost of acute care

:05:39. > :05:49.services. As we saw in the first film, we have an increasingly

:05:49. > :05:56.

:05:56. > :06:01.elderly population. The babyboomers of the '40s, '50s and '60s, they

:06:01. > :06:06.have higher expectations. Budgets are under threat. I think people

:06:06. > :06:15.are equally concerned about people with learning disabilities and old

:06:15. > :06:20.people getting kicked around nursing homes. By introducing

:06:20. > :06:27.ethics, you are saying to people wait a minute, this isn't the only

:06:27. > :06:31.thing that matters. What matters is the person you are caring for. It

:06:31. > :06:35.means paying attention to their needs, not that it is lunch time

:06:36. > :06:40.and you want your lunch and you are going to leave them there without

:06:40. > :06:44.theirs. If we have a fixed budget and we have a group of people who

:06:44. > :06:51.insist on their human rights for the provision of care, it may be

:06:51. > :06:58.the case that those who haven't got a legal right to some care but

:06:58. > :07:02.nevertheless are deserving of care get neglected, so there is a very

:07:02. > :07:09.tricky ethical issue here over rights. Ultimately, resources are

:07:09. > :07:13.scarce, they have to be allocated and if you allocate

:07:13. > :07:17.disproportionately to one group, other groups will suffer. Do we

:07:18. > :07:27.have the right to expect the state to deliver the kind of care we

:07:27. > :07:32.would like? Or are we going to be forced to take personal

:07:32. > :07:36.responsibility to contribute and save towards our own care? At the

:07:37. > :07:40.moment, for example healthcare terms, we are fully insured.

:07:40. > :07:44.Healthcare is free at the point of delivery. We have a very mixed

:07:44. > :07:50.economy in terms of the insurance that is provided by the state for

:07:50. > :07:56.social care. So we can get personal carefree but then other forms of

:07:56. > :08:02.care we may have to -- personal care free but then other forms of

:08:02. > :08:06.care we may have to pay for. That was lovely. My husband and I intend

:08:06. > :08:13.as long as possible, as far as we possibly can, to look after our son

:08:13. > :08:17.at home. The chances are Jonathan will survive into at least mid-

:08:17. > :08:20.adulthood. It is a concern we will become older carers. It is maybe a

:08:20. > :08:25.position we are coming to realise that we are in for the long-haul.

:08:25. > :08:29.We thought we might lose him sooner than we have. Jonathan is very

:08:29. > :08:33.funny. He doesn't talk but his voice is breaking. We are getting a

:08:34. > :08:38.lot of deep voices. Jonathan's condition is rare. His situation is

:08:38. > :08:44.not unique. Most of us will require some care. We will be looking

:08:44. > :08:54.towards the state or each other for some kind of support. Well done.

:08:54. > :08:56.

:08:56. > :09:01.Surely with a limited pot of cash isn't it a danger that we end up

:09:01. > :09:04.dividing society? Who will make these decisions?

:09:04. > :09:07.With me to discuss these issues are Jo Armstrong, who is an economist

:09:07. > :09:10.with the CPPR and chair of Enable Scotland. Andrew Lowe is the

:09:10. > :09:13.Director of Social Work for Dumfries and is also President of

:09:13. > :09:16.the Association of Directors of Social Work. And Pam Duncan, who is

:09:16. > :09:23.herself a service user and sits on the Board of Directors of the

:09:23. > :09:30.Disabled people's organization, Inclusion Scotland. Pam Duncan, is

:09:30. > :09:36.this a picture there that you recognise? Are people who use these

:09:36. > :09:44.services being told things are not affordable? Absolutely. We are

:09:44. > :09:49.hearing across-the-board - I have to ask the questions because I

:09:49. > :09:53.don't remember when times were affluent. People are increasingly

:09:53. > :09:56.being asked to contribute more towards the cost of their own

:09:56. > :09:59.social care. They are also increasingly getting less and less

:09:59. > :10:04.of social care for what they are paying and for what the state is

:10:04. > :10:09.offering. We are hearing of situations where people are being

:10:09. > :10:13.left in incontinence pads for 12 hours because it is cheaper to do

:10:14. > :10:18.that than to provide direct support. People are being told there isn't

:10:18. > :10:25.money around and the resources are much tighter. So you are not going

:10:25. > :10:29.to be able to have the social care that you want, deserve and have a

:10:29. > :10:33.need in order to access your human rights in society. We are being

:10:33. > :10:38.told we need to use resources differently and how we are going to

:10:38. > :10:42.go about that. These are really big issues. I would ask the question,

:10:42. > :10:48.why are we consistently talking about a cuts agenda? In my own home,

:10:48. > :10:52.when my belt needs tightened, I don't decide this week I'm not

:10:52. > :10:58.going to pay the electricity bill, I look to raise revenue from other

:10:58. > :11:01.sources. All right. Andrew, you are coming at this in a way, you have

:11:01. > :11:05.to make these decisions. Are these decisions the kind of decisions you

:11:05. > :11:11.are having to make? Are you having to say to people sorry, you either

:11:11. > :11:15.have to pay more - right across Scotland, is that what your

:11:15. > :11:23.directors are having to do? correct you, my leader would expect

:11:23. > :11:27.me to say I'm from Scottish Borders Council... Is that what we said?

:11:27. > :11:31.Don't worry. Right across Scotland, including Dumfries and the Borders,

:11:31. > :11:36.we are having to make very difficult choices every day. I

:11:36. > :11:41.don't think it is entirely as bleak as the picture that's being painted.

:11:41. > :11:45.This is - these are very difficult circumstances but they represent

:11:45. > :11:55.real opportunities as well-to-do things differently and to move from

:11:55. > :12:04.

:12:04. > :12:09.-- as well to do things differently and to a system where people are

:12:09. > :12:13.more fulfilled. We are targeting people in greatest need. We are

:12:13. > :12:20.preventing people from falling into the most extreme need. I tell you

:12:20. > :12:26.what, can I - people who are not elderly, who need social care, is

:12:26. > :12:32.that a significant - what is that as a cohort group relative to

:12:32. > :12:39.elderly people? How big is it? circumstances that the older

:12:39. > :12:42.population is by far the highest volume... Right. In terms of the...

:12:42. > :12:46.The younger adult population and the childcare population which was

:12:46. > :12:52.mentioned on your film is the population of people who have

:12:52. > :12:57.complexity of need and high levels of cost. Sorry to be blunt. If this

:12:57. > :13:00.is a small proportion of people, yes it may be that people are

:13:00. > :13:03.living longer because of the advances in medical technology. If

:13:03. > :13:09.it is a small proportion of people, it should be manageable, whereas

:13:09. > :13:12.when we are talking about all of us living longer when we get older and

:13:12. > :13:16.being healthier for longer but needing medical care and social

:13:17. > :13:22.care, that is a potential - with advances in medical technology -

:13:22. > :13:28.that is unquantifiable? There is a distinction, isn't there? Society

:13:28. > :13:32.has to make choices. When I came into social work in Dundee, people

:13:32. > :13:37.lived in long-stay hospitals, make no doubt about it, there has been a

:13:37. > :13:40.transformation in the way in which we consider people's rights to live

:13:40. > :13:44.independently and that's been a fantastic transformation. We need

:13:44. > :13:54.to go beyond that. We need to go towards an empowering kind of world

:13:54. > :13:58.

:13:58. > :14:02.where we help people to make choices. OK. Jo, there does seem to

:14:02. > :14:08.be an unquantifiable effect from healthier elderly people? Yes.

:14:08. > :14:13.is not the same thing with younger people, is it? Or is it? People

:14:13. > :14:16.with a lifetime disability, it is quantifiable to some extent. Most

:14:16. > :14:19.local authorities don't know how many people they have got. It is

:14:19. > :14:23.important to remember the majority of care is provided by people in

:14:24. > :14:29.their own homes by their own families. There are - there is a

:14:29. > :14:30.charging structure in place? There are charges being imposed,

:14:31. > :14:37.increasingly so from local authorities for some of the care

:14:37. > :14:42.that was traditionally deemed to be free. Are these charges means-

:14:42. > :14:46.tested? They will be means-tested. Is that fair? There is an obvious

:14:46. > :14:53.argument to say in cases where a family is taking care of someone

:14:53. > :14:57.who is severely disabled, that that should be entirely socialised,

:14:57. > :15:02.rather than... It is also perhaps worthwhile thinking taking one step

:15:02. > :15:05.further back again. The choices are not just the choices within the

:15:05. > :15:08.healthcare groups, the choices are having to be made at the Scottish

:15:08. > :15:12.Government level or within local authorities between what proportion

:15:12. > :15:18.of the fund goes to health, what proportion goes to local authority,

:15:18. > :15:23.and what goes to social work and education, what goes to roads or

:15:23. > :15:27.leisure. We have... Do we have a framework for... We don't have a

:15:27. > :15:31.discussion about that. We also have this implicit set of choices that

:15:32. > :15:36.have been made which says we want to give bus passes to people over

:15:36. > :15:42.60. That group are deemed to be sufficiently important enough to

:15:42. > :15:48.give them free bus passes. Duncan, where do we go from here?

:15:48. > :15:52.Obviously, none of you would want a situation where we somehow people

:15:52. > :15:56.who are elderly seem to be in competition with younger people who

:15:56. > :16:02.need care. That seems to be the situation we are running into.

:16:02. > :16:07.Where do you - how do you resolve that? The point that you have made

:16:07. > :16:12.is absolutely personal, it is about choices. One of the things that has

:16:12. > :16:21.become evident to me over the past few years is about the value we

:16:21. > :16:29.place on social care and how we budget for it. If we were having a

:16:29. > :16:37.similar debate about the NHS, rationing NHS services, I think we

:16:37. > :16:43.would have a completely different debate. Society seems to value that.

:16:43. > :16:48.One difference would be that everyone would be pretending that

:16:48. > :16:51.rationing didn't happen in the NHS. Yeah, you are right. There is

:16:51. > :16:55.rationing there. At the end of the day, we value something like the

:16:55. > :17:00.structure of the NHS. When we are talking about social care, we get

:17:00. > :17:07.into debates about - we almost treat it in the same way as we look

:17:07. > :17:12.at how we determine budgets for bin collection. So I don't think we

:17:12. > :17:17.would ever consider asking people to contribute almost 70% of their

:17:17. > :17:22.income in some cases in order to just basically get out of bed in

:17:22. > :17:28.the morning if it was considered to be part of that care system. Sure.

:17:28. > :17:34.I hear what you all say, you are going to have to ask people to

:17:34. > :17:40.contribute 70% to that because you won't have very much choice, are

:17:40. > :17:43.you? It is the thing that is getting people back and

:17:43. > :17:48.contributing in society. People who previously wouldn't have been able

:17:49. > :17:54.to do that are being encouraged, supported to take control of their

:17:54. > :17:59.own care, to choose the people to support them. That is cost-

:17:59. > :18:05.effective and we are getting the most... We are running out of time.

:18:05. > :18:10.It is important. The problem with that, Jo, is that the very cuts

:18:10. > :18:15.that are making this more difficult are caused by a recession which

:18:15. > :18:23.also makes it more difficult to carry out that agenda? Yes, I think

:18:23. > :18:26.if you ask people who do you want to spend your �100,000 a year on, I

:18:26. > :18:30.can guarantee you they will find different ways of spending it. Far

:18:30. > :18:35.better outcomes from it and save money. It is about giving choice.

:18:35. > :18:41.It is about empowering and that will create some savings. There is

:18:41. > :18:46.a pot of money? Yes. At the moment there is a drive... People

:18:46. > :18:50.receiving this should have a choice? Yes. That is essential and

:18:50. > :19:00.we would never deny that as a positive agenda. You can only do so

:19:00. > :19:01.

:19:01. > :19:05.much with the money you get. All right. We will have to leave it

:19:05. > :19:09.there. My apologies, we don't have time for the papers tonight. That

:19:09. > :19:19.is a mixed bag. That is all for this week. We will be back next

:19:19. > :19:25.

:19:25. > :19:32.Hello. Summer makes a brief return on Friday. Most of us having a fine

:19:32. > :19:39.day. It will start off a bit chilly. It will be a grey day in Northern

:19:39. > :19:45.Ireland. Overall, expect spells of sunshine. By the afternoon,

:19:45. > :19:50.temperatures will reach 20 degrees. A much brighter day across southern

:19:50. > :19:55.counties of England. Sunny spells across the far South West, a fine

:19:55. > :20:00.day too across most of Wales. Cloud will increase here. The sunshine

:20:00. > :20:04.may turn rather hazy. It will be quite cloudy in Northern Ireland.

:20:04. > :20:08.Not much sunshine on offer here. There will be outbreaks of rain,

:20:08. > :20:12.particularly so in the west. Some of that rain may work its way into

:20:12. > :20:17.the far west of Scotland. Most of Scotland looking dry and bright.

:20:17. > :20:23.The morning showers tending to fizzle out by the afternoon. There

:20:23. > :20:27.is some uncertainty as we head into the weekend. Further north, sunny

:20:27. > :20:31.spells and a few showers. Some of the rain across the Midlands may

:20:31. > :20:36.affect parts of Wales and the South West. At the moment, it looks like