Health: Stroke

Baroness Rendell of Babergh Excerpts

Wednesday 23rd July 2014 Grand Committee

[Baroness Rendell of Babergh (Lab)]

My Lords, I am grateful to the noble Baroness, Lady Wheeler, for initiating this debate on childhood stroke, a misfortune many will be surprised to learn children can suffer from. In fact, infants have the same risk of having a stroke as the old; an unborn child can have a stroke. One infant in every 4,000 live births has a stroke. It would be difficult to name an illness or disability more emotionally disturbing to a parent than a stroke occurring in a child. When it happens, a parent at first finds it hard to believe.

When I was young, both my parents died after having strokes, my father after several strokes. Between their deaths, someone I knew had a child of eight who suffered a stroke. Virtually nothing was done for my parents except to leave them to die in relative comfort. The little girl spent some time in hospital but was left partially paralysed, perhaps because it was a long time before what had happened to her was recognised and there was then no effective treatment. That was 40 years ago, and things have changed. Good care is now taken in hospitals and attention given to a parent’s psychological and emotional needs. There is recognition of the shock parents suffer when they learn of what has happened to their child.

The Evelina London Children’s Hospital, to which the noble Baroness, Lady Wheeler, and the noble Lord, Lord Patel, referred, is part of the Guy’s and St Thomas’ NHS Foundation Trust. It was founded in 1869 by Ferdinand de Rothschild, in memory of his English wife Evelina, who had died in childbirth. The hospital was restored and reopened in 2005 with 140 beds. At Evelina, the need of children to have their parents with them and the perhaps greater need of parents to be with their children is recognised, and there is no restriction on children and their parents being together. Parents can stay with their child at any time, and there is a pull-out bed next to the child’s bed.

Evelina collaborates with the Stroke Association in its Child Stroke Project. This provides tailored information for children, young people and families who are affected by stroke and offers emotional support in adjusting to the impact of stroke, while Scope runs a parenting befriending scheme called Face 2 Face. The Stroke Association has a helpline and provides support services across the country to help those affected by stroke to recover their lives.

Even more than the distress and anxiety caused to adults with stroke, childhood stroke brings fear and bewilderment to the parents of such children and it is they who need help and comfort. Apart from Scope’s Face 2 Face, the Stroke Association is now building a community of people who care about stroke and want to see people make the best recoveries. Emotional support is as crucial for recovery as physical rehabilitation, and stroke survivors’ emotional well-being should be a key part of their health and social care plans. Carers should be recognised as “partners in care” and included in the stroke survivor’s ongoing journey towards recovery. This must be especially true of stroke sufferers in childhood.

Investment needs to be increased in the provision of clinical psychologists, who should ideally be part of the multidisciplinary stroke team, both in hospital and in the community. Children and younger stroke survivors need ongoing support from diagnosis, through peer support groups and the transition to adult services, and this must include treatment of the emotional and psychological impact of stroke on children and their families. Specialist counselling is needed as children and their carers require individual attention specific to their needs.

The Stroke Association is asking health and social care providers to share their experience and successes. If such people are particularly proud of their service or the work they are doing to help people affected by stroke, they should get in touch with the Stroke Association’s campaigns website to share what they have discovered and achieved with others. Does the Minister agree that the passing on of such experience would be immensely beneficial to carers and parents of stroke-affected children, who can often feel isolated and forgotten?

Abortion

Baroness Rendell of Babergh Excerpts

Thursday 3rd April 2014 Grand Committee

[Baroness Rendell of Babergh (Lab)]

My Lords, I thank the noble Baroness, Lady Knight, for introducing this debate. Worldwide, women are still not the favoured gender. When my husband was in the Royal Navy and was stationed in Hong Kong soon after the end of the Second World War, he saw the bodies of drowned baby girls floating in the harbour. This was long before the arrival of the cheap ultrasound machine which is imported from China to India. Two thousand female foetuses are aborted every day in India.

This is not new. Demographic statistics first collected in the 19th century in some Indian villages show that no girl babies were found alive. A girl is regarded as a drain on a family’s resources. Some are killed before or after birth to avoid paying a dowry when she would have married, and some because parents lose a potential pension when a daughter leaves her home to join her husband and she can no longer care for them in their old age.

There are now reports that sex-selective abortion is happening in the UK. A study by University of Oxford academics has suggested that Indian women in the UK were aborting more female than male foetuses between 1990 and 2005. That is so concerning that the Council of Europe has suggested that member states stop giving parents information on the gender of unborn babies until late in pregnancy. Such preference for sons over daughters has tipped the natural 50:50 balance in some ethnic communities.

Will the noble Earl give an assurance that the Government take this matter seriously and will he undertake to keep it under close observation, bearing in mind that unsafe abortion results in 47,000 deaths worldwide?

Health: Stroke Care

Baroness Rendell of Babergh Excerpts

Monday 30th January 2012 Lords Chamber

[Baroness Rendell of Babergh]

My Lords, I, too, congratulate my noble friend Lady Wheeler on instituting this timely and needed debate. In recent years, as the Care Quality Commission's review points out, attitudes to stroke and treatment for stroke have improved enormously, with better access to specialist stroke units, greater use of thrombolysis and improved working across care and social services. People are able to leave hospital earlier and receive rehabilitation when they return home. Despite this progress in recovery, data collected by the national sentinel stroke audit have shown that it is after that return home that people tended to feel abandoned. More than half had unmet needs for care and more than half wanted more information about strokes. The audit found that 48 per cent of PCT areas had a two-week average wait for community-based speech and language therapy, even though one-third of stroke survivors experienced communication problems after stroke. It is on this aspect of rehabilitation that I will concentrate briefly today.

Complaints from stroke survivors included a failure to find what help could be got, a failure to be “treated like a human being”, and of a lack of respect for people's dignity, which came about through a failure to understand another culture. One woman stroke survivor had difficulty communicating because although she spoke English her mother tongue was Urdu. We have heard much lately about the desirability of immigrants who come to the United Kingdom learning our language, but here we are not talking about learning English but about speaking it to a high level of comprehension and being understood. The woman who was an Urdu speaker could speak English and no doubt read it but not confidently when she needed to take information from the printed word or from rapidly imparted speech.

Only a third of the areas covered provide information in languages other than English. Audio and DVD access is available to stroke survivors only in one-fifth of cases. Many services provide limited support and information only for people of working age, despite stroke being the largest cause of disability in adults and particularly in older people. With three main foreign languages and 16 main immigrant languages spoken in the United Kingdom, surely the time has come to remedy the situation of stroke survivors by providing those who require it with the requisite information in translation, for example, into Urdu and Bengali among others.

Good information about what stroke is and what can be done is often still lacking. The national stroke strategy, now three years old, recognises that people's needs require regular reassessment so that changes can be taken into account. A review should take place six weeks after someone has left hospital, and again after six months, and PCTs should set out that the people who have had a stroke and their carers should be involved in these reviews. Only one in 10 of the information packs given to stroke survivors mentions the reviews, or people's right to ask for a reassessment if their needs change. Many must be unaware that the reviews should take place. How much more obscure and difficult to follow are the details of reassessment for those who have to struggle through information in a language that is at the best of times difficult for them.

Contaminated Blood (Support for Infected and Bereaved Persons) Bill [HL]

Baroness Rendell of Babergh Excerpts

Friday 22nd October 2010 Lords Chamber

[Baroness Rendell of Babergh]

My Lords, I will be brief. It is Friday morning and—however serious and important the question under discussion, and this one is very serious indeed—no one wants to be too long detained. The position of those of us who support the Bill has been made very clear by my noble friend Lord Morris of Manchester and, in his report, by my noble and learned friend Lord Archer of Sandwell. We have already heard eloquent and informative speeches from four other noble Lords. I shall not, therefore, speak of statistics or the large sums of money, which have been mentioned in discussion of what levels of compensation would cost the taxpayer, or do more than touch on the clinical and medical aspects of haemophilia and its amelioration.

I am only speaking at all because I believe I am in a unique position to talk about haemophilia and those afflicted by it. Some 10 years ago I wrote a book—a work of fiction—that centred on what I called the two strands of inheritance: the inheritance of a peerage and the inheritance of a disease. This was at the time of the House of Lords Bill, and inheritance of a peerage was very much to the fore in debates in your Lordships’ House. As to haemophiliacs, their sufferings were by then being alleviated, if not cured, by modern medicine.

My book was in part a historical novel. It dealt with haemophilia in the late 18th and early 19th centuries, as well as later manifestations of the disease. I went into the peculiar nature of its genetic inheritance carefully, since many previous writers had made mistakes in this area. For this very reason I researched the whole subject with great care, investigating the discoveries made and the progress achieved at various American universities. I also used your Lordships’ Library and travelled to south-east Switzerland to see what I could discover in a village which had once been, but was fortunately no longer, the home of many sufferers from this tragic blood disease as a result of contiguity and in-breeding.

What I carried away from all this research, apart from what I needed for my novel, was an abiding indignation that, just as effective treatment was successfully allowing haemophiliacs to lead almost normal lives, these sufferers were being afflicted from an unsuspected, indeed bizarre, source. The blood that they needed—a life-giving elixir—was contaminated with some of the worst diseases known to man: HIV, hepatitis C and, perhaps worst of all, human-variant CJD. It was, in fact, death dealing. My novel ends with the descendants of those 18th century haemophiliacs leading full and active lives—the men knowing that their daughters will be carriers, the women aware that all or some of their sons will be haemophiliacs—but wise enough to become parents through adopting children. None of them could have dreamt, in fiction or in fact, that a triple plague could be visited on them through medication. None of them, in fiction or in fact, would have believed that they would have such huge premiums demanded of them by insurance companies as to be made virtually uninsurable.

When I wrote to the Guardian and the Times on this subject at the time of my noble friend Lord Morris’s earlier Bill in December 2009, outlining the tragic results of contaminated blood transfusions, I received many letters from readers. Most were from the widows and other dependants of infected people, describing how they had suffered as a result of losing the family breadwinner, which often meant also losing their homes. One told me that I was wrong to write of HIV/AIDS as being a serious disease, since so much effective medication was now provided for its victims. I hope such a view is not generally held and is not an opinion shared by opponents of the new Bill, who might then extend that principle to hepatitis C and CJD. These are terrible sufferings—even the stress and fear occasioned by HIV, as mentioned by the noble Baroness, Lady Finlay—and they are made all the worse for those afflicted, and the widows, children and families whom their deaths have left behind, by the knowledge that these diseases were received through being given the blood of drug addicts and of inmates of US prisons.

My researches taught me a great deal about haemophilia. I would not have the temerity to say that they showed me what it is like to have the disease. They did, however, teach me exactly what those sufferings may be and how to a great extent sufferers may be exempted from them by transfusions of suitable and uncontaminated blood. The transfusions received by those whom my noble friend Lord Morris has called “a small and stricken community”, which were supplied by the NHS, have unknowingly killed nearly 2,000 of them. These people were ill already. They already had a depleted lifespan. Haemophilia itself is bad enough, a daily disablement, but the treatment they were given was a case of adding insult to injury.

This is not a political issue—it makes no difference whether one belongs to the right, the left or in-between—but a moral issue. Those who took part in the previous Bill introduced by my noble friend Lord Morris—I was not among them—and those who have spoken today, have explained the situation and gone into detail, presenting various aspects of the disease and what can be done to ease it. They did so from a sense of moral indignation and resentment on victims’ part, and from a powerful sense of justice, for no explanation for the sake of clarity has been necessary. The issue is so clear that a small child could have understood it, as children can always understand what is right and what is wrong, what is fair and what is deeply unjust.