Mr Gallagher (Deputy Chairperson)
Ms Armitage
Mr Berry
Rev Robert Coulter
Mrs Courtney
Mr J Kelly
Ms McWilliams
Ms Ramsey

Mr Tom Cairns )
Dr David McConnell ) Age Concern
Ms Caryl Williamson )

You are very welcome.

Thank you. Age Concern is delighted to meet with the Committee. I hope that our submission will be as clear as Prof Stout's. Age Concern agrees wholeheartedly with all the points that Prof Stout made and was delighted to speak to him earlier.

Age Concern welcomes the revised draft Budget and the provision of free nursing care from 7 October 2002. It was devastated that the first Budget did not even mention nursing care. However, on 27 February 2001 the following motion was passed:

"That this Assembly notes the decision of the Scottish Parliament to provide the elderly with free nursing and personal care and calls on the Executive Committee to make similar provision for the elderly in Northern Ireland and to promote the greater well-being of the elderly in this part of the United Kingdom."

Age Concern agrees wholeheartedly with that motion and the implementation of the recommendations of the Royal Commission on Long Term Care for the Elderly that nursing and personal care should be free, based on an assessment of need. A distinction between nursing and personal care is artificial, unworkable and unfair. The charges for those services will cause confusion, anxiety and bitterness. I will repeat some of Prof Stout's points, because the people with whom we deal feel strongly about the matter.

If the Scottish Parliament goes ahead with its proposals, a two-tier system will be created. The divide between nursing and personal care is false. The Scottish proposals would also create a divide across borders that would disadvantage Northern Ireland citizens.

Personal care should be paid for by the state, as people have already paid tax and National Insurance. Even with the introduction of free nursing care, many will still be forced to use up their savings and sell their homes. All the organisations with which we are involved are united on the issue. The system discriminates against people with chronic illnesses, such as Alzheimer's disease or arthritis. It penalises people for their ill health. We must think again about means testing, and deliver on the promise of equity in healthcare. As Prof Stout said, the system creates diagnostic inequity. Patients in hospital have access to free personal care, but those receiving residential and nursing care must pay. That is humiliating for older people and turns them into third-class citizens. It is contrary to the spirit of section 75 of the Northern Ireland Act 1998 because it seems that older people are the only group that must pay for treatment as determined by a medical practitioner.

We are running away from older people's issues, and that is the most central issue. The longer we run away, the bigger the mess there will be. I believe that the Northern Ireland Assembly will not abdicate its responsibilities for the most vulnerable citizens. Again, as Prof Stout said, the debate never took place in the community. There is great resentment and anger about that, because people thought that the Health Service would look after them when they needed it to. There are glaring anomalies and inconsistencies in the system. What is the definition of nursing care? Must people sell their homes in order to receive care? People simply cannot understand that situation.

The case for free nursing and personal care was made most powerfully by the Royal Commission on Long Term Care for the Elderly. Universal free personal and nursing care are hallmarks of a society that understands the limits of individual responsibility. Prof Stout outlined what that means as regards how we prepare for what may happen to us as we age. We are asking the Assembly to deal with only one of the many health and social care issues that older people face.

Age Concern raised all those points with the Minister, and when we met her, we outlined the enormous confusion among MLAs and the public. She agreed to write to MLAs and to clear up some of the public's confusion. People do not understand the system. As Age Concern lobbied the Assembly, it became clear that many MLAs do not understand the distinction between nursing care and personal care.

Many people are not aware that an interdepartmental working group is investigating the financial and other implications of introducing free personal care in Northern Ireland. The group will report in June 2002. The latest figure for the cost of introducing free personal care is £24 million. The group is not taking any submissions from groups such as Age Concern, although it has now formed a working group that includes NGOs (non-governmental organisations). That approach does not represent open government on a central issue that affects older people.

Some questions related to our information from England. Our colleagues there say that nursing assessments are complex and difficult to administer. There are extensive waiting lists for assessment, and nursing homes are increasing fees. Those who were supposed to benefit from nursing assessments are not doing so. That is, therefore, not a good way to legislate. I refer back to Prof Stout's answer to Ms Ramsey: we want the legislation, but it must be appropriate.

I will hand over to my colleague Caryl Williamson, Age Concern's regional co-ordinator for advice and information. Through the service that she provides, the organisation receives thousands of calls from old people and their families. She will present some of the information that we are gleaning from England.

I run Age Concern's busy advice line, which receives about 5,000 queries a year. More than one in 10 queries relate to residential nursing care. When we try to explain the situation to people, they become concerned about the current and projected charging procedures. People at all levels display fundamental and worrying ignorance about what is happening. Many believe that Northern Ireland has adopted either the Scottish or the English model. They imagine that nursing care is free, and they do not distinguish it from personal care. People are astonished to hear that Alzheimer's disease and dementia may not be covered in the current provisions, because they imagine that those conditions have specific nursing care needs.

The feedback from Age Concern England about the English scheme has been interesting. The scheme there has been running for only six months, but Age Concern England raised concerns about the problems as early as January. One unexpected bonus of the assessment procedure in England is that it exposed poor practice and inappropriate or inadequate equipment for individuals, which might not have come to light otherwise. Unfortunately, the process is incredibly slow. Even in January there were severe concerns that care homes were using the situation as an excuse to raise prices. Another problem was that if people had difficulties with the assessment - even if they were capable of complaining - they did not know who to complain to, or where the buck stopped.

In February, Age Concern England said that the system was an "absolute shambles." It called for an inquiry by the Health Select Committee. The document says that only those

"lucky enough to live in a home which is making sure that it passes the relevant NHS supplement . likely to see the benefits of 'free' nursing care."

In March 2002, Paul Burstow, the Liberal Democrat Shadow Minister for Older People, conducted a survey and condemned the English system as "a cruel hoax". I have listed some of the relevant findings: three out of five health authorities and primary care trusts have definite evidence of homes not passing on payments - some of that evidence is widespread; one in five people are still waiting for a decision on their assessment, even though all assessments should have been completed by December 2001. We must not forget that the system has been in operation for only six months, and already the backlogs are building up. Those who have been assessed are owed £11·9 million in outstanding payments. Thirteen per cent of people did not have the face-to-face assessment that they were promised but were assessed by telephone. Glaring anomalies are still emerging despite the fact that twice the original number of nurses were employed to carry out the assessments. It is clear that the system is just not working.

Although there is only one banding in Wales, compared to the three that operate in England, officials experience the same problems. Nursing homes increase their charges so that, fortuitously, they match the amount that people have been awarded. The award is nominal; often, it has no effect on people's income.

I apologise, Mr McConnell, but could you keep your comments brief? We must leave time to hear the submission and to ask questions.

Mr Cairns mentioned that an estimated £24 million would be needed to pay for personal care. We do not know the costs of administering the nursing assessment tool, for example. Two thousand people pay for personal care, and more may become caught in the net because of the policy of selling homes to sitting tenants. People who in the past would not have owned their own home will do so now. As those people age, they may be affected by that situation.

The interdepartmental committee to consider personal care is not accepting any submissions or evidence. There may be consultation on the outcomes of the committee's inquiries, but that contradicts the thrust of open government and consultation. Consultation should take place at a formative stage. Therefore, in response to Ms Ramsey's point, Age Concern is concerned about the focus of that interdepartmental committee, its considerations and the potential outcomes. Although a working group with some NGO representation, which is attached to the interdepartmental committee, has been formed, there is no formal NGO representation on it.

Today I attended a meeting of the age sector reference group, an umbrella organisation of 17 old people's organisations, including Help the Aged, the Northern Ireland Pensioners Convention and all the local forums and consortia. Those organisations speak with one voice. They do not ask for free personal care - they demand it as a right.

I have received letters from people who are concerned because nursing homes have increased their prices. Such a price increase left one old lady with only 10p per week with which to buy personal items such as soap. What should the Department do to ensure that that does not occur?

Such situations are exceptionally difficult to avoid, and officials in England are trying to deal with that. A major nursing home provider in England stated that providers are "driving a coach and horse" through the attempt to legislate for that. In England, officials are trying to insist that nursing home providers give a detailed breakdown of their costings; for example, hotel costs and nursing care. It would be a desperate situation if people did not have what is laughingly described as "pocket money" to cover the expenses of daily living. I can only suggest that the Department consider the attempts being made in England to legislate for that. However, those steps appear to be unsuccessful.

What steps is Age Concern taking to inform the elderly and their families about the Bill and its implications? Age Concern receives 5,000 queries a year, which is tremendous. What proportion of callers raised concerns about the Bill? There is a perception that the Bill provides for both free nursing care and personal care. Do many of those who make queries believe that the Bill covers both? How many calls have you received about the Bill?

I will answer the first part of your question. The issue is so important that Age Concern does not deal with it alone. It is involved with the Right to Care group, which includes UNISON and the organisations of the age sector reference group. Through those bodies we attempt to get a better public understanding of the Bill. Age Concern has its own network of organisations throughout Northern Ireland, through which it provides information on the issue, but it is such an important matter that we need to operate as a strong sector in order to lobby.

Ms Williamson will deal with the types of queries that Age Concern has received.

One in ten queries concern residential and nursing care. However, many people receive too little information too late. First-time homeowners often feel especially at risk in Northern Ireland. Many people still feel that their home is safe because they have made a will to bequeath their property to their family. That perception exists across the board; there is widespread ignorance. Many people have no idea that this Bill is coming through.

Many believe that "nursing care" includes personal care; therefore they assume that they are entitled to free provision. They do not query why they must pay for their care until a bill arrives. If people knew what was really happening, there would be blood on the streets, for different reasons, because they would be extremely disappointed and unhappy.

The Assembly has a cross-party group on ageing, of which Rev Robert Coulter is a member. In tandem with the debate, we are preparing a briefing on the issue for all Members. We are also preparing material for the media to diminish people's confusion about the matter.

The word "free" is very cosy. The care will not be free; there are bands. Your study said that in 13% of cases people did not receive a face-to-face assessment; therefore, the outcome might have been inappropriate. The lack of assessors is an enormous concern. To date, £11·9 million is still outstanding in relation to that 13%. Your survey suggested that as a result of those assessments some people might have been put in the wrong band. If those people want a second opinion, is there a right of appeal whereby they can be reassessed?

The real confusion is deciding to whom someone should appeal. Should an appeal be made to the nurse, the home, the trust or the board? There does not seem to be a clear procedure. A person may not even realise that his or her assessment was done improperly. Someone in a home who is in very poor health will not even realise that the assessment has been made. There are questions about advocacy and buried costs. In England, there seem to be fantastic amounts of buried costs in an inept scheme that is being poorly applied. Officials are now trying to put the brakes on too late.

Prof Stout spoke about rationing by diagnosis and rationing in the system. Here we have rationing within the bands, with no right of appeal. That leads to enormous concerns, given that a right to appeal exists in respect of other legislation. Prof Stout said that Age Concern might answer my question about the English experience, which you outlined. One of the concerns that the Committee expressed earlier was that the English authorities, instead of responding to concerns that nursing homes are retaining money, decided to change the care homes regulations so that homes cannot deduct money from the residents' fees. Similar care homes regulations exist in Northern Ireland. I anticipate that, if the Bill were passed, the same problems would arise here. The Committee is concerned that there would be an attempt to change our care homes regulations, rather than address the core of the problem in the first place.

Absolutely.

Is that happening in England?

Yes. As I said in my response to Rev Coulter, the care homes are confident that you could "drive a coach and horses" through any attempt to legislate on the matter.

I want it on the record that those regulations exist in Northern Ireland, and that we would have to do something similar.

I am not sure about that.

Part of the problem in England is that the money is not paid to the individual. Sometimes people are pre-assessed, and after that there is a holding brief until the assessment is carried out. It could be down to the framing of that in Northern Ireland.

I appreciate your concern that Assembly Members are confused. For the record, Members were further confused when they thought that the legislation had not come forward due to insufficient funds. However, the legislation was not in place, and the public was not made aware of that. That is why we are discussing the matter so late. Because the legislation is late, Northern Ireland might be able to benefit from the experiences of others and improve on the other systems. What would you say to that?

I could not agree more. You raised that issue in the press recently. Northern Ireland is legislating on the matter a year late. Legislation was introduced on 1 October 2001 in England and Wales. Surely there is an opportunity to examine those matters.

Given the timescales, is it possible that evidence from the pilot schemes in Northern Ireland would come forward too late for their consideration in the debate on the Bill?

We are not sure. It is likely that it will come too late. That is a good point, Mr McConnell.

I want to clarify that I was not suggesting earlier that personal care should not be introduced - I wanted to introduce the reality that the Health Service has been underfunded by £190 million over the past 10 years. There are competing issues, and I was asking whether we should build upon that point. I am concerned that the interdepartmental working group has not taken submissions. It should take submissions from people who are interested and knowledgeable about the matter.

I wish to return to a question that Ms McWilliams asked. During our inquiry into the last Bill, we pointed out to the Department that trusts do not always make people aware of their rights. Officials were asked about that last week. During last week's Committee discussion, officials said:

"It is our intention that, with departmental direction, trusts would be told that they must make all nursing home residents aware of their rights under the legislation."

On the effectiveness of the tool they said:

"we will put in place appropriate supervision arrangements to ensure feedback and monitoring of the effectiveness of this tool."

We questioned the officials about the matter, and Ms Mc Williams asked for a copy of the details, to ensure that the tool is effective. I support the provision of free care, and I am not convinced that the definition of "nursing care" is appropriate. I agree that the separation of the two types of care is discriminatory. If the Committee rejected the Bill, it would not be passed by the Assembly. However, we would be disenfranchising 2,000 people, who would continue to suffer because they would have to sell their homes to pay for their care. Is it not right to build on the present Bill?

I could not agree more, and I discussed the matter with MLAs earlier. I thought that the Assembly would be responsible for examining the possibility of providing both types of care much earlier. Age Concern would be delighted to see a fully costed proposal for the measure, the options within the existing Budget, and an examination of the proposals for obtaining additional resources.

I am not familiar with the process whereby politicians go to Westminster and agree an adequate level of funding for this reasonable request. As this devolved Administration has no tax-raising powers, we need to examine the options within existing budgets. As Prof Stout pointed out, the Royal Commission on Long Term Care for the Elderly believe that that is eminently affordable.

Only the care element should be covered, with a means test remaining for the hotel costs. Therefore, what we are proposing is not totally free. The Scottish Parliament took that on board, much to the extreme dismay of politicians in Westminster. The Scottish Parliament flexed its muscles effectively on the issue.

We have been told that nursing homes are closing because they are no longer viable, and that accounts for the increase in their fees.

There seems to be a difference in the provision for those with Alzheimer's disease. Some are accepted into a nursing home, but others have to go into a specialised unit, which normally provides free care. You said that many people believe that their house is safe because it has been bequeathed in a will. Is a house safe if it has been given to the family as a gift? There are many homes for the elderly in my area, so that information would be useful.

Many people who have bequeathed property to their family do not realise that they have to die first for the will to take effect. That demonstrates many older people's basic lack of knowledge about how the world works. A person's house is not safe simply because he or she has signed a will.

What is the situation if a person has given their house as a gift to his or her family?

That is tricky territory, because it involves the intentional deprivation of assets. There is an excellent fact sheet on that subject. The house would still be regarded as an asset.

People with Alzheimer's disease appear to be treated differently.

That depends on how progressed the disease is. Those who suffer from Alzheimer's disease and dementia need a good deal of care and attention, which is not being defined as a nursing need - that is the problem. The disease can progress to the extent that a sufferer develops additional health conditions that require nursing attention, perhaps in a secure environment. That illustrates the real problems. People who are patently unwell, who are not themselves, and who need care and attention, possibly nursing care, may still fall outside the ambit of this scheme for a long time.

Is it not correct that a person with Alzheimer's disease who is admitted to a special unit receives free care? It seems a bit unfair.

There is a crossover. Someone with the early stages of dementia who needs only to be watched over so that he or she does not wander will not qualify for nursing. He or she may qualify later, but that could take years. It could take 20 years for someone with an early onset of dementia to reach that stage.

Further to Ms Armitage's point, yesterday I was involved in a case where someone with Alzheimer's disease was refused re-entry into a nursing home. What is the situation regarding that?

It would depend on the grounds on which they were refused readmission. It would also depend on the type of home. Many people do not realise that there is a difference.

It was a nursing home.

A private nursing home has a private contract with an individual; it is different from a residential home. The state has never provided nursing homes.

Thank you for your submission and for giving a perspective of the sector that would be most affected by the changes.

10 April 2002 /Menu / 17 April 2002 (ii)