(9 years, 12 months ago)
Commons ChamberI am very pleased to have secured this debate, as it permits further discussion on some of the work that my hon. Friend the Member for Winchester (Steve Brine), the hon. Member for Washington and Sunderland West (Mrs Hodgson) and I, as co-chairs of the all-party parliamentary group on breast cancer, have been engaged in over the past four years. We work with all the major breast cancer charities, including Breakthrough Breast Cancer, which provides the secretariat for our group, Breast Cancer Campaign, which is merging with Breakthrough next year, and Breast Cancer Care. We thank them all for their work and support.
Breast cancer is a disease that many of us will know about and have experience of. With nearly 55,000 people diagnosed with the disease in the United Kingdom every year, everyone will know of somebody—a loved one, a friend or even themselves—who has experienced this disease. It is still the most common cancer in the UK, and around a third of all new cancers diagnosed in women are breast cancer.
Over the past few decades, great strides have been made in treatment and care, leading to much improved outcomes. Since the 1980s, breast cancer deaths have fallen by more than a third, and today more people survive breast cancer than ever before. More than eight out of 10 people are living five years or more following their diagnosis. The all-party parliamentary group recently carried out an inquiry into breast cancer in older women. The resulting report is entitled “Age is just a Number”. We discovered that there were many improvements that could be made to ensure earlier diagnosis, better communication, and better treatment and support. We are pleased that many of our recommendations will be implemented and hence overall life chances will be improved further.
I congratulate my right hon. Friend, at the end of her time in the House, on bringing the topic of breast cancer to the Floor of the House of Commons in the way that she has. She conducted the inquiry with me and, as she knows, one of the things that I was so struck by is the belief out there that the risks of contracting breast cancer go down as one gets older and passes the screening age, whereas we know and the evidence shows that, on the contrary, they go up.
I thank my hon. Friend for the great leadership that he gave in the inquiry. I believe we brought out a great number of myths, which will much improve the approach to primary breast cancer. However, fewer people know about secondary breast cancer.
In October 2010, the United Kingdom had its first secondary breast cancer awareness day. In secondary breast cancer, sometimes known as metastatic, advanced or stage 4 breast cancer, the breast cancer cells have spread to other parts of the body, most commonly the bones, brain, liver or lungs. Secondary breast cancer is incurable and, sadly, 11,600 people die every year as a result of secondary breast cancer—the equivalent of 32 people every day. Many people diagnosed with secondary breast cancer live with the disease for a number of years. In such cases, the care and support that they receive can make a real difference to their quality of life.
I was able to raise the issue of data collection directly with the Prime Minister during Prime Minister’s questions in 2010. At that time there was no reliable data collection on how many people were living with the disease in the UK, meaning that care and support services could not be accurately costed or developed. Subsequently the main breast cancer charities and the three co-chairs of the all-party parliamentary group met the Prime Minister to discuss what was needed. We were very pleased to welcome in 2011 the publication of the Department of Health cancer strategy, “Improving Outcomes: A Strategy for Cancer.” The strategy included the aim of beginning a full collection of statistics on secondary breast cancer from April 2012, yet there still seem to be considerable gaps, as I shall outline later in my speech.
The purpose of data collection is to make sure that the quality of services offered is improved. Although we can undoubtedly find examples of best practice, there are still many concerns about the overall level of service provision in this area.
I am sorry to interrupt my right hon. Friend’s flow again. One of the things that came out of our time with the Prime Minister on collecting the data on secondary breast cancer was the importance of secondary breast cancer care nurses. I pay tribute to the work of Breast Cancer Care in this respect. Does my right hon. Friend agree that those nurses can make a transformative difference to women and their families who are going through secondary breast cancer, by linking them up to other services in the NHS and providing knowledgeable support to them?
Again, I thank my hon. Friend. Over the years we found that the provision of a specialist nurse makes a crucial difference. When someone has a symptom that they are not quite sure about and they think, “I don’t want to bother to go to my GP”, being able to pick up the phone and get expert advice deals with the problem quickly, takes away the worry, and if it is necessary to see a doctor, they can go, confident in the knowledge that they are not just imagining the symptom and that it is important for them to follow it through.
A recent survey by Breast Cancer Care, which was released to mark this year’s secondary breast cancer awareness day on 13 October, reported that 90% of people with a secondary breast cancer diagnosis have experienced pain as a result of the disease in the past month. Half of those described their pain as moderate or severe. For 78% of people, their pain meant that they were unable to undertake normal everyday activities, such as household chores, work, child care, hobbies or socialising. Pain is one of the most common symptoms of secondary breast cancer, but much of it can be controlled and managed through access to palliative care. In fact, guidelines from the National Institute for Health and Care Excellence state that referrals to palliative care should be offered soon after a secondary breast cancer diagnosis. However, the same survey by Breast Cancer Care found that only 41% had been offered a referral to a palliative care team. That means that thousands of people are experiencing pain that could be controlled and managed. I am sure that we can all agree that it is unacceptable that anyone should be expected to live with unnecessary pain.
Another indicator of where the care and treatment for secondary breast cancer is not good enough is the lack of secondary breast cancer clinical nurse specialists. The NICE quality standard for breast cancer highlights that everyone with secondary breast cancer should have access to a clinical nurse specialist. The most recent results of the national cancer patient experience survey also found that access to a named clinical nurse specialist was often associated with having a more positive experience in care. For primary breast cancer—I am pleased that progress has been made in this area—it is much more routine for patients to have a clinical nurse specialist to help to co-ordinate their care and provide the support they need.
I thank the hon. Gentleman for his intervention. I hope that the Minister has taken that point on board, because it is really important. Although data are being collected, they are not being received by various groups, and the purpose of this debate is to address that.
The pilot was run by the National Cancer Intelligence Network in collaboration with Breast Cancer Care, and it involved 15 breast cancer units across England. The pilot report, published in March 2012, identified 598 patients with recurrent or metastatic breast cancer. Of those, only 53% were recorded as being referred to a clinical nurse specialist, palliative care nurse specialist or other key worker at the time of diagnosis. That is despite the NICE quality standards and the evidence in the cancer patient experience survey of the benefit to patients of a named nurse.
The pathway—the person who can help to pilot the patient through services—is not only found in the public sector; there are also services in the third sector. Is my right hon. Friend aware of the amazing work of Breast Cancer Haven, which has two centres—and, I hope, a third on the way in our Wessex area next year? It provides a complementary service that helps women to feel human again after they have had surgery and a devastating secondary diagnosis. This is not just about connecting them to services in the NHS; it is also sometimes about the charitable sector.
I thank my hon. Friend for reminding us of those very important services. I very much hope that I can visit one of Breast Cancer Haven’s units in due course, because I have not yet done so.
The pilot recommended that all breast cancer units in England submit data on patients with recurrent and metastatic breast cancer using existing data collection mechanisms. However, since the pilot no such data have been published. Since January 2013, it has been mandatory for all new recurrent and metastatic diagnoses to be recorded in England. The third annual report on the strategy confirms that this collection is taking place, but the problem is that the data do not seem to be publicly available.
A recent parliamentary question by the hon. Member for Ealing, Southall (Mr Sharma) about diagnosis of metastatic breast cancer in his constituency was responded to by the Office of National Statistics, which said:
“Detailed information about secondary cancer diagnoses is not routinely recorded on individual cancer registrations sent to ONS for processing and publishing as National Statistics. For these reasons it is not possible to provide figures on secondary breast cancer.”
This information needs to be made publicly available to allow scrutiny of the data and to help highlight areas that require action. It would be helpful if the Minister outlined what plans are in place to start publishing these data and whether the data include routes of referral. If there are no such plans, what is the reason for not making the data publicly available?
Not only have we seen no data published on secondary breast cancer, but there is also evidence to suggest that the data collection is not happening consistently across England. Breast Cancer Care is concerned that this will impact on the quality of the data that could be made available. Whether we will have a clearer picture on the needs of secondary breast cancer patients remains to be seen. Once consistently collected, it is also imperative that data can be accessed by research organisations, including charities, to drive improvements in care. Obviously, it is crucial that there are strong safeguards on privacy, but for numerous other reasons, including uncertainty following the restructuring of the NHS, there is great concern that routinely collected pseudonymised data sets are not consistently being made available for health research.
Breast Cancer Campaign has drawn my attention to some detailed points about data collection. The first relates to the current review of the national cancer peer review programme, which routinely monitors the quality and safety of NHS cancer services. I understand that it collects data on a number of key measures related to secondary breast cancer. There are concerns that it may not continue next year in its current form, or at all. I hope the Minister will comment on that. How will patients be provided with information on the safety and quality of their local cancer services, should the national cancer peer review programme be discontinued?
Secondly, if we are to achieve the Health Secretary’s goal of being among the best in Europe for cancer survival, measures to hold clinical commissioning groups to account for the cancer services they provide are vital. What consideration has the Minister given to the inclusion of indicators on cancer patient access to a clinical nurse specialist and multidisciplinary teams in the CCG outcomes indicator set, and what steps can she take to ensure that CCGs are held to account on their performance against that set? What further discussions is the Minister actually having?
In conclusion, the Government should be congratulated on the important progress they have made on cancer over the past four years. Initiatives such as the cancer drugs fund have made a big difference to patients in improving access to clinically effective drugs and treatments. However, in order to achieve the Government’s stated ambition of being the best place in Europe to survive cancer, more needs to be done. For that to happen, evidence is needed to provide the intelligence and insight required to enable local commissioners and health care professionals to plan effectively to meet their patients’ needs. I hope the Minister will join me in agreeing that it is no longer acceptable that the collection of data on secondary breast cancer does not consistently take place.
This is an important public issue. A petition by Breast Cancer Care calling for secondary breast cancer to be a priority for this Government has to date secured almost 12,000 signatures—a fitting milestone, given that almost the same number are dying from secondary breast cancer every year. Will the Minister commit to making secondary breast cancer a priority for her Department and, once more evidence is highlighted from the data, to working with Breast Cancer Care and other charities to improve the support and care that patients receive?
Only once everyone has the opportunity to access a clinical nurse specialist to support their care, to be referred to palliative care so they are not in unnecessary pain, and to receive the best possible care and treatment to live as good a quality of life as possible with the disease can we truly consider the United Kingdom to be one of the best in Europe for cancer care.
I think we will have to rely on the Minister being informed of that number. It has not been drawn to my attention that anybody charges less than the maximum, as is usually the case when a maximum is set.
In July, over 200 park home owners travelled to London to lobby their MPs. That is an amazing number given the distance and the age of many park home owners. It is important to note that their campaign has no funding whatsoever.
There are at least three elements to a site owner’s income, including the initial siting of the mobile home, the pitch fees, and the commission payment. On the siting of a new home, a site owner may purchase a new unit at a wholesale price and will incur further costs such as transportation and connection to services. However, it is reasonable to assume that the final selling price will exceed all costs incurred, and perhaps produce a significant return. As soon as the home is re-sold, the commission clicks in. In another scenario, a park home owner could replace their home, meaning that they will be charged for connections to services and landscaping, leading to more potential profit through re-charging—and again, when the unit is sold, the commission will click in.
On pitch fees, research by the National Association of Park Home Residents in November 2013 revealed that monthly pitch fees in 1,075 parks varied from £40 to £382, with an average of about £150 per month—quite a lot for people on fixed incomes. The 2013 Act will introduce some accountability, with an annual review of pitch fees, an opportunity for park home owners to challenge pitch fees on the basis of lack of maintenance or deterioration of the site, and a requirement for site owners to justify increases above the retail prices index. I hope that there will also be fully published audited accounts for these transactions.
On the commission itself, it is sometimes argued that this payment provides an important income stream to the site owner, and it is equally argued that the payment is essential for site improvements. A case is also put forward that it is not in the interests of park home owners, who are often on low incomes, to pay higher pitch fees out of current income, as would be required without this sales commission. In that sense, it might be seen as a deferred payment. I do not want to create unintended consequences, and hence I am not following the wording of the petition in asking that the commission be scrapped or reduced, but calling for a review. I think we need some facts.
I was at the rally in the summer and saw the strength of feeling about this issue, which we are right to bring to the Floor of the House. I completely concur with the right hon. Lady’s view that we must not legislate in haste and repent at leisure. She will be aware of the report from the Deputy Prime Minister’s Office back in 2002, which sounded a note of caution about abolishing the 10% charge, saying that pitch fees could rise to between 20% and 32% if we did that. Having a review is absolutely the right way to go, and I back her on that as a fellow officer of the all-party group on mobile homes. I also congratulate her on securing this debate.
I absolutely agree. Transparency is the key to finding the right answer for everybody in this scenario.
Obviously, a site owner must get a reasonable return on capital, and we want to encourage good site owners to remain in the industry. Park homes are an important part of the housing supply and should be encouraged. The Government acknowledge that the park homes sector plays an important role in the provision of low-cost housing for the elderly, and that it frees up under-occupied homes that are much needed as we face a housing crisis. However, with pitch fees, other overheads and the 10% commission, many residents worry that the costs of owning a park home are becoming unviable. The 10% commission charge is undoubtedly a matter of concern. Although it is now paid by the purchaser, it does reduce the sum of money paid to the seller.
Park operators have argued that they cannot remain in business without the 10% commission charge, yet our petitioners have pointed out that it would be foolish for a business to rely on an income that is unpredictable. It is difficult to predict how many new homes will be purchased, or used homes re-sold, in a year. Many residents reported feeling trapped in their homes and unable to sell. Owing to park rules, many sites are only for people of retirement age, and so the need to move into a nursing home or some other form of residential care is a real possibility. Having to give the park operator such a high percentage from the sale of their home reduces the amount the seller has to put towards their care.
Park home owners feel discriminated against and ask, “In what other leasehold property arrangement would a payment be made to the leaseholder on the sale of the property?” They cite examples of poorly maintained sites and no real improvements over time, and a perception of a luxury lifestyle for some site owners. Clearly, there are counter-examples of exemplary site owners, which I welcome, and I would like them to showcase their best practice. Transparency and published accounts would be helpful, to encourage all site owners to follow best practice.
Park home owners also point out that the value of the property is influenced by their contribution to the home’s value via its upkeep and maintenance, and argue, “Why should the site owner benefit from this contribution?” That is a good point.
The Department put together an excellent document, “Park homes: know your rights”, following the legislation promoted by my hon. Friend the Member for Waveney (Peter Aldous). In the past, site owners were part of the sale, because they had to approve it, but the 2013 Act has taken them out of that equation. Did the right hon. Lady take that into consideration when preparing her speech?
The park home owners say that that gives even less justification for the 10% commission, because the site owners are not involved any more.
I received an interesting representation from a park home owner, who wrote:
“I am not personally in favour of abolition of the sales commission. This would remove an opportunity to improve the sector. Linking a reduced sales commission to site owner performance will improve site maintenance, sustain home values and assist mobility.”
That is an interesting idea and perhaps we could work it through.
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Yes, there is an important element of reviewing what is in place or is about to come in in the near future, but not all of that is entirely understood by park home owners. We need a clear statement of what is happening now and what will happen in the future, and we need to try to untangle the pitch fee and the commission to be clear what items we are talking about. For example, is the commission just for contingencies, or just for improvements? I find the issue confusing, and I do not think we have bottomed that out yet. I agree that we cannot make any big moves until we have reviewed the legislation properly, but I think we can move forward by getting more transparency.
Not surprisingly, the petition calls for a reduction in the commission rate. Petitioners are also interested in looking at whether we should consider the difference in value between the purchase and selling prices of the unit when a commission is applied. That might be quite complex if there is deterioration on the unit, but obviously, that is food for thought.
We need a full and frank debate on the issue. We need transparency on what the various payments are being used for, and we need to ensure that there is no further exploitation of park home owners. Exploitation is still going on regarding some of the utility charging. It should all be out in the open, but I am sure that we can all come forward with examples.
I apologise for my discourtesy in arriving late for the debate. As my hon. Friend knows, through the work we have done with the all-party group and the many debates in this Parliament, exploitation is the key point. I agree with her point on pitch fees, about where they go, what they are for and transparency, and she knows I do. However, the point is that the fee is effectively a charge, tax or levy on one group of home owners that would not be and is not accepted for any other form of property ownership. Once again, park home owners are put in a lesser category compared with everyone else we represent. That is the point.
I thank my hon. Friend for his support throughout the campaign. That is a valid point.
We must not just sit back. It is great that we have the legislation, but we need a continuous full and frank debate on the issue. As I said, we need transparency, and equally we need to ensure that the industry is viable and that responsible site owners have a viable business model.
We ought to praise good practice instead of just focusing, as we have to do, on some bad practice. We should praise and look at some good sites and find sites where residents are satisfied. That would be a good approach, and then we can make comparisons.
We have achieved a lot in ending the injustices that were being suffered, but we cannot be complacent until all park home owners are treated fairly. I ask the Minister to be prepared to look deeper into the matter to ensure that we get the right balance for site owners and park home owners.
There will be a lobby, organised by my constituent, at 4 pm on 2 July in Committee Room 10. I very much hope that the Minister will attend simply to set out what is going to happen with the existing legislation as far as pitch fees are concerned. Today, I hope, is the start of a constructive debate.
(13 years, 11 months ago)
Commons ChamberI thank my hon. Friend for that intervention. I am sure that we will be continually reinforcing the same points.
I sincerely believe that we need a fit-and-proper-person law, which local authorities will welcome.
I add my congratulations to the hon. Lady on securing the debate. She and I work well in many other areas, and I pay tribute to her work on this. We need not only justice for park home owners in their campaign but confidence for people who may think about living in park homes in future but might be terrified of doing so. In my constituency, we often hear about the idea of affordable housing, whatever that means in practice, but these are, in many cases, truly affordable homes. Many people who could have the idyllic lifestyle that park homes can afford may be terrified about moving into that environment because of some of the things that are being mentioned. I hope that that will be one of the things that comes out of this debate.
I thank my hon. Friend for that intervention. It is indeed the case that this should provide an idyllic lifestyle and a useful addition to the housing supply.
Somebody said to me that we could make a comparison with the employment of a warden at an elderly persons’ dwelling site, because such a warden would be required to have certain characteristics. I am not suggesting that a site owner equates to a warden in any way, but the fit and proper person rule should be taken into account.