Laryngectomy

– in the House of Commons at 7:14 pm on 21st April 2004.

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

Photo of Tom Clarke Tom Clarke Labour, Coatbridge and Chryston 7:27 pm, 21st April 2004

The catalyst for this debate can be traced back to a letter that I received from the Lanarkshire Speakeasy group. Contained in the letter was a poignant plea for support for people who had developed cancer of the larynx and ultimately had to have a laryngectomy. The letter was signed by Ann Muir, of whom I will say more later.

My principal aim tonight is to highlight the plight of laryngectomees, and in particular how they are treated in relation to applying for disability living allowance. There is a genuine belief in the group that they are not being treated fairly. I look forward to the response of my hon. Friend the Minister, and I welcome her presence.

In terms of local government boundaries, the group encompasses North and South Lanarkshire councils, which have a population of 628,000 people. It is a voluntary group whose purpose is to offer hope and encouragement to laryngectomees—people who have had their voice box removed due to cancer of the larynx—and to families and carers. Its prime objective is to ensure that all members, of whom there are approximately 100, are included in all aspects of community and social activities. One of its most significant achievements is to encourage people back into society after radical surgery, as laryngectomees often withdraw from contact outside their own family circles. The secretary of the group, Ann Muir, is an outstanding person, possessed of an amazing fighting spirit. I believe that there is no praise too high for this remarkable woman.

Let me explain to the House what laryngectomy is all about. Ann Muir has told me of her own experience. Often people are unaware that they may have a problem until certain symptoms become evident. They include hoarseness or change in the normal voice lasting for more than three weeks, breathlessness or difficulty in breathing, difficulty in swallowing, a cough or chest infection and a swelling in the neck. After a family doctor has been consulted, a series of tests will be carried out to check a patient's general health and confirm or rule out a cancer diagnosis.

The lowest point for any patient is the simple shock of being told "You have cancer." It is at that point that every cancer patient knows what may be facing him or her. Ann underwent radium treatment for six weeks on 33 separate occasions in order to avoid a laryngectomy. A special mask was made for her, and she was bolted on to a table for treatment. Despite Ann's bravery, she admitted that that was a most frightening experience. The larynx, or voice box, has three main functions: to allow the air that we breathe to reach our lungs, to protect the lungs by closing when we swallow food or drink, and to project our voices when the vocal cords vibrate.

As the radiation treatment was insufficient, Ann was told that she must have a laryngectomy. Cancer of the larynx is quite rare, affecting fewer than 3,000 people each year in the United Kingdom. More men than women develop it, usually after the age of 50—although only the other day I was talking to a woman whose partner, aged just 43, has just had a laryngectomy.

A total laryngectomy is an operation to remove the larynx completely. Just think what that must be like. Following the operation, breathing and communicating will be done very differently. Patients are so medicated for the first four to five days that they are completely confused. Ann said that at that stage she saw herself in a mirror. Visitors would say that she was looking well; Ann's response was that if she was looking well, heaven knows what she would look like when she was ill.

One week after the operation, a patient's face and neck are massively swollen. There are holes in the neck and tubes coming out everywhere, with pain control the only salvation. Ann's granddaughter visited her and said "Gran, I don't like those. They look like teeth in your neck." The youngster was not to know that the metal stitches and the clamps were to hold Ann's head together.

For surgical voice restoration, a catheter was inserted through a small hole in the back of Ann's trachea. The catheter keeps the hole open so that the voice valve can be put in place later. Once all that has been overcome, the next phase—that of learning to talk—begins. Removal of the larynx means that talking can no longer happen naturally, and the way in which a person breathes has been altered permanently. When that process is complete, the real task of rebuilding the person's life truly begins.

Photo of Mr Huw Edwards Mr Huw Edwards Labour, Monmouth

I am sure that my right hon. Friend will want to join me in paying tribute to those medical specialists who perform this procedure, including those at the Singleton hospital in Swansea who treated my father four years ago, when he was 83. He is alive and well, and speaking well, following that operation.

Photo of Tom Clarke Tom Clarke Labour, Coatbridge and Chryston

I am extremely grateful to my hon. Friend for that timely intervention. His high regard for the medical profession is widely shared by those with experience of this condition.

The pain, suffering and inconvenience of all that I have just described inevitably lead to a permanent life change. Families have to make adjustments to help a person cope. There is the psychological impact of coming through such a traumatic experience, all the time thinking that one could have died.

In my discussions with Ann, I also met another laryngectomee, Bill Wright, who is the chair of the Lanarkshire Speakeasy group. What struck me was the love and devotion of his wife Ellen, who explained that since his laryngectomy she has never had a proper night's sleep. Without complaint, she constantly lies awake listening to her husband breathing, with great difficulty, during the small hours of the morning.

In preparation for this debate, I consulted various bodies, not least the Department for Work and Pensions office in my constituency. I had a meeting with Mr. David Collie, who is my main point of contact on all DWP matters. Two other representatives from the disability benefit centre were at the meeting. The purpose of the consultation was to establish what the DWP provides in terms of service to constituents. At the conclusion of my speech, I will return to the pre-eminent role that the DWP should perform on this issue. For now, I record my thanks for the Department's co-operation both nationally and locally so far.

Assessing a disability living allowance form in the first place is not as easy as one might think. For example, my local DWP office does not have a DLA application form available. Filling in such a form or forms would be an ordeal for most people, never mind a person who has just undergone major surgery. Someone said to me, "You would need to be a Philadelphia lawyer to cope."

The fact is that there are two sets of explanatory notes accompanying two forms. DLA 1A section 1 has 68 questions, with 141 options. DLA 1A section 2 has 159 questions, with 188 options. Is all this really necessary? When DLA was first introduced, a DLA form was available in the Benefits Agency offices. A member of staff used to spend an hour or longer helping people to fill in the form. That staffing resource is simply not available in today's restructured offices. Before somebody points out that all a person needs to do is telephone for assistance, I remind the House that we are talking about laryngectomees—people who do not find it easy to talk, and certainly not for as long as it would take to complete the DLA forms.

Why does it have to be a paper application? Are there no alternatives that take into consideration the person's needs and disabilities? Moreover, when one finally gets round to completing the forms, we are entitled to ask how they are dealt with. In the office that processes the applications, there are trained decision makers, with supervisors to keep them right and even doctors available if they need to consult on any medical matters. The Department of Work and Pensions has all the resources to hand, and all its needs are covered in full. But what about the client? Inevitably, tonight I want to focus precisely on those clients.

Is it any wonder that when Ann Muir was starting up her voluntary group and visited every person in Lanarkshire who had experienced a laryngectomy, she was appalled at the standard of neglect that she discovered? I have no wish to exaggerate the position; there was not neglect in every home. However, there was sufficient evidence of such neglect in more instances than I believe should have been the case. It cannot be right that when a person has suffered all that is involved, they then arrive at such an unacceptable stage.

A new study on the problems faced by people affected by cancer when assessing benefits in Northern Ireland has revealed that many lose out on the financial support to which they are entitled. The report "Benefits Access for People Affected by Cancer in Northern Ireland" is the result of a project undertaken jointly by Macmillan Cancer Relief and the Northern Ireland Social Security Agency. Interviews with patients, carers, health and social care professionals, agency staff and other advice centre workers helped to identify the main barriers that people affected by cancer face when attempting to access benefits.

Heather Monteverde of Macmillan said that the outcome of the report confirmed what Macmillan had been hearing from patients for years. She said:

"Our experience has told us that financial concerns are second only to physical pain as a cause of stress for people with cancer and their carers. We're delighted that the Social Security Agency has worked with us on this project to get a clear picture of the problem. We now look forward to the implementation of the recommendations."

She concluded:

"By working together, we can ensure that people affected by cancer get the benefits advice and support they so clearly need."

In my view, Heather is absolutely right.

What do I want to see on the ground for people who have had a laryngectomy and others with cancer? I want to see the DWP take a leading role in bringing together health, local government and other agencies to analyse the scale of the problem. I want to see joined-up government in action for the people who need it. I want cancer patients to be made aware of what benefits they are entitled to claim. I want experts such as welfare rights officers to help to complete those labyrinthine application forms.

Photo of Jim Sheridan Jim Sheridan Labour, West Renfrewshire

It is right that during this debate we focus on the individuals and the financial implications for them, but does my right hon. Friend also accept that organisations such as Macmillan Cancer Relief struggle day in, day out to supply their service? It is now time for the Government to consider tax exemptions for such organisations.

Photo of Tom Clarke Tom Clarke Labour, Coatbridge and Chryston

I am grateful to my hon. Friend. I am sure that the Chancellor and his colleagues in the Treasury will take his important point on board.

I want cancer victims to have automatic representation to tribunals. Again, the best people to do that would be welfare rights officers. I want an end to cancer patients and their families worrying about coping, and I trust that our debate has made a helpful contribution to that.

I conclude with a quote from Mr. Forth, who was interviewed for the Northern Ireland report. He said:

"People with cancer shouldn't have to fight for benefits, when all effort is in fighting cancer itself."

Photo of Maria Eagle Maria Eagle The Parliamentary Under-Secretary of State for Work and Pensions 7:45 pm, 21st April 2004

I begin by congratulating my right hon. Friend Mr. Clarke on securing the debate and on putting his points in way that we have all appreciated. I also pass on my thanks and admiration to Ann Muir, Bill Wright and other constituents of my right hon. Friend who run Lanarkshire Speakeasy. I do not believe that any Minister who deals with these issues could find any way of replacing the sort of work that Ann and Bill do in their local communities. We have national systems, but the sort of work done by volunteers in local communities is irreplaceable. I pass on my thanks for the work that they do. They have also given my right hon. Friend valuable information to help with his preparation for the debate. There is no better way for Members to find out what it is really like than to talk to people in their own constituencies.

Laryngectomy is indeed the severe and radical procedure that my right hon. Friend has graphically illustrated. There is no doubt—the Department does not dispute it—that many of those who have undergone it will be eligible for disability living allowance. One of the consequences of laryngectomy is total loss of speech, although voice production can, as my right hon. Friend and my hon. Friend Mr. Edwards explained, be reacquired.

Disability living allowance is a tax-free, non-contributory and non-means-tested benefit, the purpose of which is to provide a contribution towards the extra costs faced by severely disabled people as a result of their disabilities. Entitlement to the allowance, as my right hon. Friend is well aware, is not linked to a specific diagnosis of particular disabling conditions. It is not a medicalised benefit in that sense. It is based on the requirements of people with disabling conditions for additional care or mobility help, so it is a very individually based benefit, depending on the effects of a disabling condition rather than its diagnosis. However, there is no doubt about the fact that people who have undergone laryngectomy qualify for the benefit on the same basis as any other disabled people—in other words, they have to meet the entitlement conditions.

DLA has a care component and a mobility component, and the care component is most relevant to the particular condition. The care component has three rates. There is a higher rate for people who are so physically or mentally disabled that they require from another person any of the following: frequent attention throughout the day in connection with their bodily functions; continual supervision throughout the day in order to avoid substantial danger to themselves or others; prolonged or repeated attention at night in connection with their bodily functions; or watching over for a prolonged period or at frequent intervals at night in order to avoid substantial danger to themselves or others. There is a middle rate for people who have those needs during the day or at night, and a lower rate for people who require attention in connection with their bodily functions for a significant portion of the day, or who cannot prepare a cooked main meal for themselves if they have the ingredients.

Whether or not those entitlement conditions are met on individual claims is determined by decision makers on the basis of the facts of the case. The forms to which my right hon. Friend drew attention are there by way of self-reporting packs, which are designed to enable our decision makers to understand the particular needs of any individual. I recognise and have frequently said that forms of the length and complexity illustrated by my right hon. Friend can undoubtedly prove a barrier to people applying. However, help is available. It is not the case that our staff will not assist. Our increasingly sophisticated information technology, which the Department has recently acquired, enables staff to present individuals with a much shorter form, based on their individual needs as determined by questions from staff to elicit which sections of the form are most relevant. That is usually done through telephone helplines, but I take on board my right hon. Friend's point that those who have had laryngectomies cannot be expected to answer reams of questions on the phone. It would not be comfortable or indeed possible for many of them to do so.

The Department is committed to making its services accessible. Indeed, we are required to do so under the Disability Discrimination Act 1995. If clients have difficulty with communication, as many people with laryngectomies clearly do, we will make appropriate arrangements to ensure that they can access our services properly. Those arrangements may include home visits or other methods, but it is not in doubt that the Department is committed to ensuring that everybody who might benefit from our services has access to them. I would be more than happy to discuss with my right hon. Friend's constituents the ways in which that can be achieved in their area or how we could do it better. The point that my right hon. Friend made about access is very important. The last thing we want is for people to worry about how they can let us know about their requirements and we have got much better at providing an individual service tailored to those who wish to apply to us.

However, not everybody who applies will succeed. People's needs vary, not only based on their diagnosis but based on other factors. I am not saying whether those who have had laryngectomies are likely to succeed or fail, because applications will be decided on individual assessments by decision makers. My right hon. Friend is correct to say that staff in the Department—the decisions makers—have access to doctors and advice to ensure that they sufficiently understand the implications of laryngectomy to make proper decisions about the applications received. The Disability Living Allowance Advisory Board also provides guidance—it was last updated in 1999—that gets across the seriousness of such cases and the care that someone who has had a laryngectomy may need.

I hope that there is no excuse for our decision makers getting decisions wrong in a vast array of cases. I would expect them to get the decisions right more often than they get them wrong. However, I take on board my right hon. Friend's point that it is important that clients themselves and those who wish to apply can do so in any way that they find comfortable and helpful, and it is certainly our intention to ensure that they can do so.

To respond to some of my right hon. Friend's other points about bringing together agencies and joined-up government, all of us in government aspire to making central Government services more accessible locally and more meaningful to the individuals who are trying to gain access to them. As he made it clear, they have enough difficulties in their lives, in dealing with laryngectomy and the health implications of living with cancer, so they should not have to negotiate the obstacle course that they can face in their dealings with various Departments and local government—and who knows which other type of local public service they can come across? We do our best to ensure that such things are improved.

I do not pretend that we have achieved perfection—no hon. Member would believe me if I tried to suggest that we had—but, none the less, we recognise that it is important that our services exist for the benefit not of my staff or anyone else's staff in a different Department, but of our customers and clients. We are for ever trying to find new ways to ensure that people such as those to whom my right hon. Friend has drawn our attention today have every opportunity to get what they need from us. We are committed to ensuring that those who are entitled to such benefits receive them speedily and in a way that is relevant to them.

I agree with my right hon. Friend that more information is required. We can always do better in that respect. There is often fear among disabled people and those who have acquired a disability or who are living with cancer or another serious condition, and they want to concentrate on getting better and on living with their condition, not on trying to work out the finances. We understand that we always need better information about where individuals can find the relevant help.

On some of my right hon. Friend's other points—I realise that time is escaping us—I am more than happy to write to him to ensure that I deal with any issue that I have not covered. I assure him that those who are living with laryngectomy have just as much entitlement to disability living allowance as anyone else and that we are not just administrators of the benefit. We are committed to ensuring that those who are entitled can gain access to their entitlement.

My right hon. Friend drew the attention of the House to the forms that are used, and we are committed to reforming the way in which those forms work in a way that helps those who may have an entitlement to claim properly and to pass the information on to us. We are more than happy, where necessary—it clearly is necessary in some cases—to make proper arrangements to enable people to complete those forms in a way that is comfortable and useful to them. May I finish by saying how grateful I am to my right hon. Friend for raising this important matter on the Adjournment today?

Question put and agreed to.

Adjourned accordingly at four minutes to Eight o'clock.