Barrie Such

HC Deb 07 December 2000 vol 359 cc238-48

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Jamieson.]

7 pm

Mr. Peter Luff (Mid-Worcestershire)

I am deeply grateful for this opportunity to explore one of the most tragic cases that I have known in my eight years as a constituency Member of Parliament.

Last Monday, 4 December, was a melancholy anniversary for the Such family. It was the second anniversary of Barrie Such's transfer to Evesham community hospital, where he has been cared for brilliantly, but where he also simply should not still be. I emphasise that he is not being held against his will, as some local media have reported. But we all know that hospitals should not become permanent addresses. That is not their purpose.

Barrie's place as a father and as a husband is with his family—of that I believe there can be no doubt—but something has gone desperately wrong since that fateful day, on 27 January 1993, when he was very seriously injured in a fall at work. Barrie became an tetraplegic in that fall—but suffered only limited brain damage, as has recently been recognised. He could and should have been reunited with his family permanently, but instead the last eight years have been a nightmare for them all.

This is a tragedy, but it is a tragedy without any obvious villains—and that is what I find so perplexing and frustrating. Everyone involved in this case shares my deep sense of sadness, and even anger, at the injustice that has been done to Barrie and his family. But still nothing happens.

If this is a tragedy, I feel like Lear on his blasted heath, railing against the elements. For I have railed against the elements on Barrie's behalf, against BT, for which Barrie was working when he had his accident, against the national health service, against Worcestershire's social services department, and against Wychavon district council's housing department—but all to no avail. And I still do not know who the villain really is. For each of them has done something to help, but I believe that none of them has done enough.

A lot of people have worked hard for Barrie, and above all one of the bravest women I know, his devoted wife, Wendy. The supporting cast includes their friends, her GP, the spinal unit at Oswestry, a mass of professional health staff and the amazing nurses and domestic staff of the Evesham community hospital, who really have kept hope alive. There are many professional people who feel deeply about their failure to care for Barrie appropriately, but the fact is that, for whatever reason, they have failed.

I have railed, too, against the Benefits Agency, which has also failed to ensure that the appropriate benefits and advice were available to the Such family. There I seem to have had more success, and I am grateful for the work now being done by the agency to ensure that part of the Such family's tragedy is addressed.

As we debate his case now, Barrie lies, increasingly institutionalised, in a hospital bed—a bed that we are likely to need this winter. He is one of Worcestershire's 100-plus bed blockers. "Bed blocker" is an ugly phrase. Behind each and every case lies a failure of the system to provide appropriate care to a human being, but there can be no greater failure than the treatment of Barrie.

I worry that there are other people like Barrie Such, in other hospital beds or old people's homes, facing similar tragedies. And I worry, with a health system creaking at the seams and social services departments under appalling pressures, that there will be more Barrie Suches in future—hence the importance of this debate.

Barrie's story is long and complicated, but I shall try to tell it simply. Christmas 1992 saw the Such family happy and contented. Barrie was then 47 years old and married to Wendy, and they were celebrating with their three children—Louisa, then 15, Catherine, 11, and Nicholas, nine. They were a close and happy family.

I have a photograph of those children, taken on a holiday that summer, and a formal portrait taken in 1998 to mark Barrie and Wendy's silver wedding. I met Nicholas recently at their home in the village of Badsey. They are children of whom any parent would be proud. They are now 23, 19 and 17. Their childhood with their father has gone. They did not know, in those Christmas holidays of 1992, that a sudden and traumatic event a month later was destined to destroy their happiness.

Barrie Such was a faultsman joiner working in what is known to BT as the PC Midlands zone. He was an experienced employee and had worked for the company for 27 years. On 27 January 1993, he was sent on what he knew was a difficult job. In a remote country lane, he fell from a ladder while cutting branches from a tree that had been interfering with a cable.

It is not in dispute that Barrie was not following BT's safety instructions to the letter. But from what I know of the accident, I believe that it was not possible for BT engineers at the time to meet their targets and comply with those safety instructions.

There were only two hoists in the area, one of which should have been used for such a difficult job. Instead, Barrie was expected to prop his ladder up against a tree in that narrow country lane and lop the branches that threatened the telephone cable.

BT seemed to feel that Barrie was wearing the wrong footwear at the time of the accident—not boots but slip-on shoes. What it did not say is that the shoes were issued to Barrie by the company—and, mysteriously, the company collected them from his home a few days after the accident. I am clear that BT must bear a heavier share of the responsibility for Barrie's accident than it has accepted so far.

The medical description of his injuries is lengthy. In essence he broke his neck and was lucky not to die. But it was immediately apparent that he would be paralysed from the neck down for the rest of his life. He had gone in a few sickening seconds from working father to tetraplegic. He was airlifted to Cheltenham hospital and subsequently transferred to the Midland centre for spinal injuries at Oswestry, where he remained until 2 August that year.

For the next four and a half years Barrie lived at home, but the strain on the family, and on Wendy in particular, was just too great. He needs 24-hour care, so all the family joined in with all the aspects of care and nursing—feeding, washing, changing clothes, making wet and dirty beds, lifting, changing blocked urinary catheters and just "Dad sitting".

There was marvellous help from district nurses, auxiliary nurses and a home help, but it just was not enough. Although the family home was converted to enable Barrie to live there, it is a small house and it was a difficult, cramped life for them all. For example, the through-floor lift was a problem as there was no room for a wheelchair and a bed in the bedroom. It was not until the summer of 1994 that the house was completely converted, causing enormous disruption to the structure of the property. To be fair to BT, I must add that it helped with all that adaptation work. I believe that the more junior staff in BT were shocked by what the Such family were going through.

To enable the professional helpers to get Barrie up for the day, the bathroom was out of bounds to the rest of the family between 8 am and 10 am. In the evenings the reverse process put it out of action from 5.45 pm to about 8 pm.

In February 1996, a community psychiatric nurse was called in. That nurse's professional judgment confirmed what any sensible outsider could have seen. There was nothing for Barrie to do, the family was overstretched and the house was insufficiently adapted to make life tolerable for any of them. As the nurse put it in a letter, the family are very grateful for the aids they have been provided with but I, as a professional, am appalled and seriously wonder how much longer they will be able to manage with the present facilities without further deterioration in their mental health. Arrangements were made to extend the house, but the existence of a restrictive covenant made this impossible. The stresses that all this caused were probably the final straw. Imagine the quality of family life in those four and a half years. Something had to give—and it did. Respite care was urgently needed, and was provided at a local nursing home. It was made permanent after a few weeks, but sadly this only made matters worse.

After eight months in the nursing home Barrie's health had deteriorated seriously—unsurprisingly, in retrospect, since an old people's home was hardly the place for him. For whatever reason, the care was not of the standard needed to nurse a relatively young tetraplegic. In October 1998 Barrie was back at Oswestry where his condition was stabilised. About six weeks later he was transferred to Evesham community hospital, where he has been ever since.

It was in March 1999 that Wendy first came to see me at my surgery. She was almost reluctant to complain, half apologising for troubling me. But I quickly saw that she was a member of a family that had been betrayed by the society in which they lived. However, that recognition has done nothing for the family, and Barrie is still in the marvellous but inappropriate care of the nurses at Evesham—marvellous because they are the finest bunch of medics and carers one will find anywhere, but inappropriate because his place is still, as it has always been, with his family.

The first of many case conferences was held at Evesham hospital on 22 April 1999. Perhaps unsurprisingly, in view of the fact that this debate was to be held, the most recent was held yesterday, and was also the best attended so far. Meanwhile, I tried to talk to the Chairman of BT. I wrote to Sir lain Vallance on March 16 1999: In my seven years as a Member of Parliament I have rarely been as moved as I was by the case of Mr. and Mrs. Barrie Such. BT has, in many respects, been helpful to the Such family. I summarised that help, but went on to say: I do not yet think BT has done enough and I would very much like to come to meet you if at all possible to discuss the case. I have never made such a request of a company chairman before so I hope you will understand that I take this matter exceptionally seriously. I concluded: The family have been completely devastated by the loss of their father and I believe the time has come to find some way of reuniting them rather than condemning him to live in an old people's home. Iain Vallance would not agree to see me, but mysteriously, as the group personnel director told me in a letter, a sudden offer of £25,000 was made by BT as a final and further ex gratia payment. A letter to me signed per pro the group personnel director on 4 May 1999 said: It needs to he understood that this payment is purely ex gratia and is made on compassionate grounds only. No further payments will be made, under any circumstances. There was no discussion as to the appropriateness of the sum, or of the implications of its acceptance for the family's benefit situation. It was a take-it-or-leave-it offer, perhaps meant kindly, but not made thoughtfully. The Suches never cashed the cheque, and eventually sent it back to BT because they feared that it could seriously compromise their benefit entitlement. I believe that they were right to act as they did.

Again, to be fair, I must tell the House that BT has done a lot for Barrie—including voluntary redundancy 15 months after his accident, giving him maximum benefits and the immediate payment of a deferred pension—and it contributed towards the alterations to the family home. But money does not buy happiness; in this case, it did not even buy a sustainable solution to make happiness possible. Perhaps a little more thought and planning by BT might have made a difference, and it still could.

Meanwhile, Worcestershire health authority and the county social services department were falling out over who should pay for Barrie's care. On 6 April 1999, I was told that the arbitration procedure had been invoked to resolve matters. Evesham community hospital had assessed the total staff input to Barrie as 10 and a half hours in every 48-hour period, so no wonder the social services department felt that the health authority should take some long-term responsibility.

In a despairing letter in August 1999, Wendy told me: If I could give any advice to the government it would be "cut down on the number of purses", that a human being is a whole being, it is impossible to decide sometimes which part of that being is NHS and which is social services and that in trying to split up a whole being you destroy it. In a sense nothing has happened since then. I have written a flurry of letters. I have visited Barrie in his hospital bed and Wendy at the family home. I have attended a case conference at the hospital, where everyone's frustration and impotence was clear, but out of which nothing really came.

I have tried, and failed, to persuade BT to help Wendy buy another property in Badsey that would be suitable for conversion for Barrie to come home to—if a suitable care package could be developed. BT has repeated its offer of an ex gratia £25,000, which is something. This time it has done so in a more considered way, but it still has not solved the problem.

I have got the Spinal Injuries Association involved, but through no fault of its own, it has found that it can do nothing except confirm how dreadful this case is. The association provided me with a useful statement of the requirements of tetraplegics, the crucial conclusion of which is the need for 24-hour care.

We explored an option at a new extra care facility in Evesham, called Yates Court, but we all concluded that it simply did not meet Barrie's needs and would not reunite the family. The county social services department has just had a deeply disappointing financial settlement from the Government, which means that it has precious little cash to help Barrie.

Wendy has sent me cuttings showing that other people—a paralysed armed robber and an income support claimant—have been given expensive homes by the taxpayer. She has sent me a cutting that boasts of a £1 million gift to a charity for carers from BT's £14 million community activities budget. What a shame that BT cannot help carers like Wendy and her family, whose unlooked-for role as carers was created by the company's own failings.

I told the chairman of the health authority on November 3 last year: I regard the failure of the health authority and social services to develop a package of care for Barrie as an indictment of the way we treat younger disabled people in our society. In a letter later that month, the health authority told me: Mr. Such is one of an increasing number of people who have experienced permanently disabling traumatic injury and rehabilitation techniques such that they can continue to live with support in the community setting. The nature of Mr. Such's disability requires a comprehensive housing, health and social care package, the exact nature of which is still being determined in conjunction with Mr. Such and his family. So there are more Barrie Suches, just as I feared, which makes it all the more vital that we solve his problem, and learn from it. No family should have to go through this.

So I look to the Minister tonight for guidance, and perhaps a ray of hope. To put it simply, Barrie must never be exiled to an old people's home. He certainly must not be moved from the Evesham area, as some local professionals appeared to be suggesting at a case meeting yesterday.

If those are the alternatives, Mr. Such should remain where he is, in Evesham community hospital, where he is being cared for magnificently. The Such family need to move to a larger house in the Badsey area, close to their friends and with a comprehensive and guaranteed care package for Barrie. Surely that is not too much to ask.

I expect to see Barrie tomorrow when I visit Evesham community hospital to study its preparations for the winter. I will be telling him what the Minister says.

One final thought, Mr. Deputy Speaker. If you go to the small country lane to see that tree and the cables that started this story, you will find that the cables are now underground. As Wendy said to me, that is probably because of the fault record on that stretch. The money was found to sort out that problem. Now let us sort out Barrie.

7.15 pm

The Minister of State, Department of Health (Mr. John Denham)

I congratulate the hon. Member for Mid-Worcestershire (Mr. Luff) on securing this debate about the provision of care for younger disabled people, and in particular on behalf of his constituents, Mr. and Mrs. Such. I have received reports on the case from the regional office of the social services inspectorate.

I should say at the outset that I am not in a position to respond to the issues concerning the conduct of BT. However, the hon. Gentleman fairly placed his views on the record.

Mr. Such's case highlights the importance of health and social services working effectively in partnership to ensure that disabled people with on-going health and social care needs receive the care and support that they need in a setting that is right for them and their families. The case also illustrates the problems that arise when, for whatever reason, such care is not provided or does not produce the desired results. Health and social services must come together to provide a fully co-ordinated service that deals with the needs of the whole person and the family.

It would be usual in most cases for the disabled person to be cared for in the family home, but a small number of patients have a very limited number of options available to them, often because of their circumstances, their age and where they live. Returning to the family home may not be possible and general residential or nursing home provision for older people may not be suitable for their needs. In such cases, special schemes have to be accessed. Where those do not exist, as in many rural areas such as Evesham, special facilities have to be developed. Some of those cases present particular difficulties for health and social services, and raise significant complexities in relation to housing and benefits policy.

As the hon. Gentleman said, Mr. Such was looked after for a long period by his wife and children in their home, but in the long run that was simply not a sustainable situation, for reasons that the hon. Gentleman clearly set out. I, too, acknowledge, from what I know of the case, the enormous devotion that Mrs. Such has shown during that period. Since that time, Mr. Such has remained in hospital, separated from his wife and family. That is a very disturbing situation. Mr. Such does have special and complex needs, but every effort must be made to resolve the matter as soon as possible.

At the risk of duplication, I want to set out the main events in this sad and complicated story, and some of the difficulties and dilemmas that have frustrated progress. I will then outline the action that may be taken. If there is time, I shall turn to some wider policy measures that the Government are taking, which may assist in this and other cases.

Barrie Such was the unfortunate victim of a tragic accident in January 1993, which left him with substantial and permanent disabilities. Following his discharge from hospital in August 1993, he was cared for at home by his devoted wife, Wendy.

Adaptations were carried out at the family home—that is what would normally happen in such circumstances—but they were not successful. Quite simply, the house is too small to accommodate all the equipment that Mr. Such needs and to allow the rest of the family to have normal access to facilities such as the kitchen and bathroom. As the hon. Gentleman said, plans to extend the property fell through at the last moment.

Mrs. Such bravely continued to care for her husband in those circumstances for four and a half years, with the help of only the district nurse and a home carer who was provided by social services. That was not a sustainable arrangement, and eventually Mr. Such was admitted to a nursing home for a period of respite.

It was clear by then that Mrs. Such would need substantially more help, as well as more suitable accommodation, if she were to be able to resume looking after her husband. The nursing home, which catered for older people, could not provide the special care that Mr. Such needed. I acknowledge that his health deteriorated. He moved to the Evesham community hospital in November 1998.

As the hon. Gentleman said, this is an unsatisfactory story, but one in which he has not been able to identify a principal villain. I have been assured that the professional staff who are working directly with Mr. and Mrs. Such have rightly been committed to finding a solution that will ensure that Mr. Such's complex physical, social and emotional needs can be fully and safely met, but they have been frustrated by a number of complications and dilemmas. The result has been delay in making arrangements for the long-term care of the hon. Gentleman's constituent. Mr. Such is still in a community hospital, which was originally intended as a temporary arrangement and is an inappropriate setting for his long-term needs.

I do not want to minimise the problems that have arisen as a result of the failure to resolve the situation. Mr. and Mrs. Such have had to continue to live apart. They have also had to live with the uncertainty and worry caused by the lack of any real progress.

Various options have been considered during the past two years, including placement in extra-care sheltered housing and in a local nursing home. It took time to explore those facilities, but in the end neither option was considered suitable because each is geared mainly to the needs of older people and could not provide a stimulating environment for a younger disabled person.

I understand that general agreement has been reached among all the agencies involved in Mr. Such's care that the most appropriate environment for him is with his family in a suitably adapted house, where a 24-hour package of care can be provided by health and social services. Two main issues arise from that plan. First, suitable accommodation must be identified. Secondly, a care package must be set up and funded. Health, social services and housing agencies in Worcestershire all have an important part to play in implementing the plan.

Mr. and Mrs. Such naturally want to continue to live in their village in Worcestershire. They want to live together, in a property that is large enough to accommodate them, their three children and a personal care assistant for Mr. Such. Their own home is not viable, but there is a shortage of suitable alternative properties in the area. I understand that Mr. and Mrs. Such have found a property which they might wish to purchase. Wychavon district council has prepared a scheme in outline. A surveyor will shortly carry out a thorough feasibility study on the property, but I must make it clear that it is not yet known whether the property will prove suitable.

If it is possible to proceed with that property, the costs of conversion will be considerable. Some of the cost could be covered by a disabled facilities grant and by the sum promised by BT, to which the hon. Gentleman referred. A disabled facilities grant, which entitles Mr. and Mrs. Such to financial help with conversions costing up to £20,000, is available from Wychavon district housing department. The department also has the power to pay for works costing more than that amount. If the property is also in need of repair, for example to the roof or wiring, the housing department may be prepared to meet those costs separately through a renovation grant or through home repair assistance.

An application has been made to a local charity for funding. The county social services department has indicated that it would consider what powers it has to assist under the Chronically Sick and Disabled Persons Act 1970. It is important that the housing and social services departments work together to provide the right solution for Mr. and Mrs. Such.

I understand, although I know that this is not the preferred option, that Wychavon district council is exploring the possibility of rent or full purchase in conjunction with Evesham and Pershore housing association. In some cases, clients may find arrangements with a housing association a better and less costly option than having to convert their own home. It is important that whatever home is found for the family, the solution does not, as far as possible, disadvantage Mr. and Mrs. Such financially.

Turning to the care arrangements, it is clear that if Mr. Such is to enjoy a reasonable quality of life at home in the community, he will need an extensive package of health and social care, as well as housing. Mr. Such will also need a round-the-clock team of trained personal care assistants to meet his basic health and social care needs, along with qualified inputs from the primary health care team, local therapy services and various aspects of social day provision. It is important to consider the views and wishes of Mrs. Such as the main carer, in making decisions about the detail of the care plan.

The health authority and social services department in Worcestershire were initially unable to agree about the assessment of Mr. Such's continuing care needs. The arbitration procedure under the continuing care agreement was invoked but the matter was not resolved. I understand that health and social services have now agreed jointly to fund a package of care. The NHS will provide the health care components of the package and Worcestershire county council will make arrangements for the social care elements. A specialist nursing agency has been identified which could provide the necessary care. The care arrangements and the necessary funding could be put in place almost immediately. The building or refurbishing of a property to accommodate Mr. Such with his family would clearly take some time.

To sum up, Mr. Such was looked after by his wife for almost five years with a relatively modest amount of support. That arrangement—inevitably, I think—broke down and it is now clear that a much more substantial package of care is required. That can only be achieved by agreement between the three key agencies—health, housing and social services—to find suitable accommodation and to put in place the care package. Some progress has now been made in clarifying the funding arrangements for personal care. The fundamental problem is accommodation. It is vital to make progress on that issue, so that Mr. Such does not remain in hospital for any longer than is necessary.

I have asked my officials from the NHS executive regional office and social services inspectorate to meet with representatives of Worcestershire health authority and social services department as soon as possible to facilitate a rapid resolution of the matter. My officials will establish with the authorities whether all options for meeting the capital costs of new accommodation for the family have been explored. They will also monitor the implementation of the care plan and the funding agreements that have been made. I have also asked my officials to ascertain whether there are any similar cases involving younger disabled people in Worcestershire and, if necessary, to investigate the circumstances in those cases. I again acknowledge that the hon. Gentleman has said, fairly and rightly, that there are no villains in the case. None the less, I am anxious to ensure that lessons are learned from the handling of the Worcestershire case.

I have said that health and social services in Worcestershire must work together to move forward the care plan for Mr. Such. That will require close co-operation with the agencies in the area. I shall now outline some of the measures that the Government have introduced to bring about significant improvements in the provision of health and social care services.

Mr. Luff

At this point, it would be right of me to express my gratitude for what the Minister has said so far, which fully meets my expectations of the debate.

Mr. Denham

I am grateful to the hon. Gentleman.

The changes the Government are making are designed to improve the quality of care that disabled people and their carers receive. They should ensure that services are delivered more quickly and are better co-ordinated. The White Paper "Modernising Social Services", published in November 1998, set out our plans to overhaul social services. Younger physically disabled adults and older people will benefit from the national objectives for adult services in the White Paper, which promote the independence of adults assessed as needing social care support, to enable them to live as safe, full and normal a life as possible.

The hon. Gentleman mentioned a letter in which Mrs. Such suggested that what was needed was to cut down on the number of purses. I am sure that he welcomes the commitment in yesterday's Queen's Speech to legislation to enable the development of care trusts, whereby health and social services will be able to pool power and funds in a single delivery organisation. That has, in part, been prompted by previous experience of people finding themselves trapped by poor co-ordination between two parts of what should be an integrated care system.

The Government are increasing the resources available to social services departments by 3.6 per cent. in real terms in the years 2000–01 to 2003–04. In 2001–02, support for local authorities is increasing by 2.6 per cent. in real terms, which compares favourably with the average growth in social services budgets of just 0.1 per cent. during the last Parliament. The personal social services standard spending assessment for Worcestershire in 2001–02 will be £76.625 million, which represents an increase of 5.2 per cent.

In addition, the promoting independence partnership grant is designed to foster partnership between health and social services in promoting independence. Worcestershire received £2.3 million in partnership grant last year and will receive £1.98 million this year. On 27 November, we announced an additional £100 million next year for the provision of social services, earmarked for the expansion of social care and rehabilitation services. Subject to the approval of Parliament, Worcestershire will receive £2.77 million in promoting independence grants in 2001–02.

The hon. Gentleman mentioned bed blockers. Fortunately, the overall national trend in the number of delayed discharges, as we call them, has been downward for more than the past three years. In addition, like other parts of the country, Worcestershire received additional funding for the winter.

The motion having been made at Seven o'clock, and the debate having continued for half an hour, MR. DEPUTY SPEAKER adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at half-past Seven o'clock.