Railways: Disabled Passengers

Baroness Masham of Ilton Excerpts

Thursday 24th May 2018 Lords Chamber

[Lord Young of Cookham]

As a matter of fact, I did not take the legislation through the House of Commons; it was taken through by, I think, my noble friend Lord MacGregor. It was my task to implement it, which was as much of a challenge. Despite its criticism, the basic structure introduced in that Parliament has remained the same with the rolling stock companies, the train operating companies, franchising and Railtrack/Network Rail. If it was such a disastrous structure, why has it remained almost intact for 25 years?

[Baroness Masham of Ilton (CB)]

My Lords, is the Minister aware that it is very difficult if you are a disabled person who has booked assistance, which I have sometimes, and you get delayed, generally by getting stuck in a taxi in the traffic, and cannot get through to the station to warn it that you are not coming on that train? Can he do something about that?

[Lord Young of Cookham]

I understand the noble Baroness’s concern. All train operating companies have to sign up to Passenger Assist, which enables people to pre-book to make sure that the right facilities are in place at the right station at the right time. If the station is inaccessible to the passenger, the train operating company should make arrangements, perhaps with an accessible taxi, to get the passenger to a station which they can access. The ORR is reviewing the disabled passengers policy, and I will see that the noble Baroness’s point is passed on to it.

Contaminated Blood

Baroness Masham of Ilton Excerpts

Monday 29th January 2018 Lords Chamber

[Lord Young of Cookham]

I am grateful to the noble Baroness, and I am very sorry to hear that she lost a nephew as a result of this tragic sequence of events. I looked at the Haemophilia Society website earlier today, and I did pick up the controversy that she has just referred to. I think it will be an important, but not exclusive, witness and giver of evidence to the terms of reference, and I am sure that the chair will be aware of the anxieties that the noble Baroness has just referred to. We want to ensure that all those who want to give evidence are able so to do. I hope that the chair will take the advice of many of those who gave evidence that there should be a regional dimension to this inquiry. People should not have to come to London if they want to give evidence.

[Baroness Masham of Ilton (CB)]

My Lords, will Scotland and England be treated the same? Will the inquiry cover all of the countries involved, including Northern Ireland, Scotland and Wales as well as England? There have been some problems in the case with which I was dealing with regard to compensation if you lived in Scotland and were contaminated in England, or vice versa.

[Lord Young of Cookham]

I am grateful to the noble Baroness. This is a UK inquiry. The problem affected the whole of the UK. There are provisions under the Inquiries Act for consultation to take place with the devolved Parliaments and Assemblies, but it is a UK inquiry. There is a specific issue about the arrangements made for helping those who suffered. It is a devolved responsibility. Those particular responsibilities may differ in Scotland from the rest of the UK.

Health and Social Care

Baroness Masham of Ilton Excerpts

Thursday 15th December 2016 Lords Chamber

[Baroness Masham of Ilton (CB)]

My Lords, I thank the noble Lord, Lord Harris of Haringey, for having secured this debate, which for some time I have thought needs discussing. I join other noble Lords in sending our thoughts at this time to the noble Lord, Lord Prior. I also congratulate the noble Baroness, Lady Chisholm of Owlpen, for taking on the extra load. As we draw near to Christmas, the ill, disabled, frail elderly people and the vulnerable homeless should be in our thoughts at this time.

We hear a great deal about the patient-centred health service. This should not just be words; patients and patient associations should be part of the system and the patients’ voice should be listened to. They should be part of the team, not just a number to be dealt with. I declare an interest as president and founder of the Spinal Injuries Association. We have a wealth of knowledge collected over the years, which we are only too pleased to share with anyone who may be interested. It is a catastrophic situation if you break your neck and become paralysed. SIA supports members and their families. We have a very complex health system. With so many different bodies it is difficult for even health professionals to know their way around and who is responsible for what.

I support flexibility of care and encouraging health and social services to work in co-operation and communication, which must be the best way. But the fact is, both the National Health Service and social care are in crisis due to pressure and shortage of doctors and other staff, so there are demands on the services and a lack of funds to cover the increasing needs of patients who expect and want a high quality of care.

Growth in the workforce has not kept pace with the growth in patients. The Government ought to do a comparison between the UK and Germany to understand why patients seem to get a better service in Germany. When new life-saving drugs come on stream, German patients get them quickly while our patients have to wait, and sometimes never get them. This debate addresses the effectiveness of the local Healthwatch network and its independence from sponsoring local authorities, and the role of Healthwatch England. Healthwatch England and the local Healthwatch organisations have a number of statutory duties such as promoting and supporting the involvement of local people in the commissioning, provision and scrutiny of local care services.

The health and social care reforms of 2012 set a powerful ambition of putting people at the centre of health and social care. To help realise that ambition the reforms created Healthwatch in every local authority area across England, and Healthwatch England is the national body. Healthwatch is supposed to be unique, in that its sole purpose is to understand the needs, experiences and concerns of people who use services, and to speak out on their behalf. Knowing this debate was to take place, I asked many people if they knew about Healthwatch and what it is supposed to do. Not one of them had heard about it, including my sister-in-law who is Lord Lieutenant of the East Riding of Yorkshire.

North Yorkshire is bigger than the whole of Belgium, and that county has only one local Healthwatch, situated in York. There are many problems at the moment in rural areas, with community hospitals and care homes being closed, but I have never heard a comment from Healthwatch supporting the local communities. If there is an important health issue, it is the Patients Association which is asked to comment by the press. Perhaps this debate will help to expose some of the problems. I feel that Healthwatch bodies do not represent rural areas; they are situated in large towns and cities and are spread too thinly to do the job of helping communities. Last Friday morning, my secretary telephoned the Healthwatch in York to get some information but she got only an answerphone. She left a message but we never got a response.

I want to tell noble Lords about a positive project. Independent Age, a voluntary organisation, has joined with Healthwatch Camden. Independent Age has developed a quality assessment for care homes based on the things that older people and their families want and need. Because Healthwatch Camden has a statutory right to enter care homes on request, it has partnered with Independent Age as part of a pilot programme. This will increase the amount of information available to older people when making decisions about their care, as there is often not enough transparency over which care homes are good and which are not. It is good to hear of bodies working together. So much time and energy is wasted when organisations work in silos.

North Yorkshire’s health watchdog, the county council’s Scrutiny of Health Committee, will hold a high-profile conference on 16 December—tomorrow—in response to NHS England’s plan to reorganise services in the area. The Government are rolling out sustainability and transformation plans—STPs—which cover 44 different areas of the country and are intended to accelerate the implementation of the five-year saving plan. The fear is that plans are being rushed through and modelled around the needs of urban centres, depriving the needs of rural areas.

The county has already seen reductions in health provision, with the closure of the Lambert Memorial Community Hospital in Thirsk and the downgrading of the maternity unit at Northallerton. The distances in rural areas can be immense. People do not mind travelling long distances to specialised expert services, but for respite care and general medical matters they need to be nearer home. Can the Minister give an assurance that the special needs of rural areas will be safeguarded across the country? There is suspicion of STPs, which do not seem to be open and transparent.

Everyone wants a thriving NHS, not a failing service. Many people thought that if they voted for Brexit, the money saved would go to the NHS. They will feel that they were led up the garden path if things do not get better.

NHS: Congenital Heart Disease

Baroness Masham of Ilton Excerpts

Wednesday 14th December 2016 Lords Chamber

[Baroness Chisholm of Owlpen]

I want to share with noble Lords a little of what these standards are about. I feel quite strongly about this: it is so important, and it is the right way forward to determine where these operations should be done. The standards state:

“Each congenital cardiac surgeon must perform a minimum of 125 … congenital cardiac … surgical procedures … each year, averaged over a three-year period … Each consultant congenital interventionist must be primary operator in a minimum of 50 congenital procedures per year, averaged over a three-year period. There must be a designated lead interventionist who must be primary operator in a minimum of 100 procedures per year, averaged over a three-year period”.

This will ensure optimum outcomes for all patients.

[Baroness Masham of Ilton (CB)]

My Lords, does the Minister agree that this debate has gone on for a long time and the insecurity is very bad for patients and for staff, and that it is not just about the Brompton hospital but about other hospitals throughout the country?

[Baroness Chisholm of Owlpen]

The noble Baroness makes a very good point. This has been fiercely debated since the publication in 2001 of the damning report into the high death rates among babies undergoing heart surgery at Bristol Royal Infirmary. The last time plans were put forward, in 2011, it led to a bitter fall-out, pitting hospitals against senior health bosses, and two years later the proposals were scrapped, with NHS bosses being told to look again. That is why we are now trying to go forward, so that we can cover both adult and children’s services.

Community Pharmacy in 2016-17 and Beyond

Baroness Masham of Ilton Excerpts

Thursday 20th October 2016 Lords Chamber

[Baroness Chisholm of Owlpen]

As I said, the impact assessment was published today. I think that I did answer the noble Lord’s questions. He asked how pharmacies were going to be looked after in deprived areas and I explained about the pharmacy access scheme and how these pharmacies will indeed be protected. He also asked about the integrated pharmacies and as I said there would be £112 million to deliver a further 1,500 pharmacies. They will be integrated into general, joined-up practices within the NHS. This has to be the way to go—multidisciplinary areas where we will be focused on the deployment of clinical pharmacies and pharmacy services in the community and primary care settings. This will make a difference to groups of general practices, care homes and urgent care settings that all have pharmacies within them.

[Baroness Masham of Ilton (CB)]

My Lords, how will the community pharmacies be saved in rural areas? The numbers are very small but the people—such as elderly and disabled people who may not drive—are absolutely stuck. As it is, the pharmacies in my local villages are not open on Saturday afternoons or Sundays, which makes things very difficult, particularly in the summer when there are tourists around. As the surgeries are shut as well at weekends, the only alternatives are the A&E departments.

[Baroness Chisholm of Owlpen]

Pharmacies are privately owned and there is competition among them. On the whole, it is beneficial for them to provide the necessary services but, as I said earlier, as far as keeping pharmacies open in rural areas is concerned, we are absolutely committed to that with the pharmacy access scheme.

NHS England: HIV Prevention

Baroness Masham of Ilton Excerpts

Tuesday 18th October 2016 Lords Chamber

[Baroness Chisholm of Owlpen]

Yes, certainly if they lose their appeal, it goes back into the normal commissioning process. Of course we recognise that studies have shown that PrEP has been a success, but we also need to remember that it is a matter of how it is used. There are several ways that we have been tackling HIV until now, and PrEP is only one in a range of activities to tackle it. We need to remember that, for it to work, PrEP needs to be taken daily, and sometimes it is difficult to get this group always to take it daily.

[Baroness Masham of Ilton (CB)]

My Lords, will the Minister give us an assurance that life-saving drugs will not be cut back for people with HIV and other life-threatening conditions?

[Baroness Chisholm of Owlpen]

As I said earlier, we have difficult decisions to take. It is not up to the Government to decide this. As with all new drugs, these are properly assessed for cost and effectiveness to see how they can be commissioned in the most sustainable and integrated way.

Deregulation Bill

Baroness Masham of Ilton Excerpts

Wednesday 11th February 2015 Lords Chamber

[Lord Alton of Liverpool (CB)]

My Lords, the Minister may not be surprised to find that I am keen to intervene on this amendment, moved by the noble Lord, Lord Hunt of Kings Heath, but he may have been surprised by the noble Lord’s ability to put together an interesting coalition of voices which would not necessarily always agree on some of the substantive issues raised in the context of human fertilisation and embryology. On this occasion I strongly agree with what my noble friend Lady Warnock and the noble Lord, Lord Winston, have said, and I hope the House paid attention to the specific example that the noble Lord gave of someone having to spend £11,000 in a London clinic. I find that extraordinary and we are all grateful to the noble Lord for telling us about it.

I strongly agree with what the noble Lord, Lord Hunt of Kings Heath, said about some of the organisations mentioned in the amendment: the Care Quality Commission, the Human Tissue Authority, the Professional Standards Authority and the Human Fertilisation and Embryology Authority. What have they got to do with economic growth duties? They have much more important duties than that and I find it amazing that we are dealing with this issue at all in the context of the Deregulation Bill.

If we examine the press releases of the Human Fertilisation and Embryology Authority, or look at its website, we will see, in terms, the phrase that the noble Lord, Lord Hunt, used. The HFEA says:

“We are not an economic regulator”.

That is also emphasised in a previous Written Answer by the noble Earl, Lord Howe, in which he stated:

“The HFEA is not an economic regulator and, accordingly, does not publish information on costs at a clinic level”.—[Official Report, 22/1/13; col. WA 195.]

And nor should it. So, surely this serves only to emphasise that the HFEA is not competent to undertake any economic growth duty.

Indeed, at last year’s Progress Educational Trust’s annual conference, the noble Lord, Lord Winston, described how most NHS trusts charge above cost, and that they are driven by profit motives. Dr John Parsons, the former director of King’s College Hospital’s assisted conception unit, also argued at the same conference that simple greed had made profits, rather than compassion for patients, the top priority of many fertility clinics today. That point was underlined by the noble Lord, Lord Winston. Dr Parsons further argued that this encouraged the use of dubious technologies which are motivated simply by market forces rather than treatments motivated by compassion that are targeted to suit the needs of the individual patients about whom we have heard today. Are the Government proposing that the HFEA should emulate those whom it is failing to regulate?

If the HFEA, which is not an economic regulator, should now have the additional duty to make a profit, how might its judgments be further impaired by such pecuniary interests? How might this exacerbate what the report of the Progress Educational Trust’s last annual conference described as—I repeat what was quoted by the noble Lord, Lord Winston—

“the rampant commercialisation of IVF in the UK”?

If the profit motives of some avaricious clinics go unchecked by the regulator, and the regulator itself becomes increasingly motivated by profit, will this not make an already bad situation even worse?

It is far from clear that the HFEA has proven itself to be a particularly effective regulator as it is. The noble Lord and I do not agree on this point. I do not believe that it is sufficiently robust. To begin with, recent Written Answers to Parliamentary Questions reveal that it does not even maintain proper records on the number of human embryos used in research or allowed to perish. Instead, the HFEA seems more concerned about providing repeated references to a pinhead, the relevance of which to the number of human embryos destroyed is far from clear, except perhaps as a reflection on the competence of whoever is responsible for answering these Questions.

The HFEA’s enforcement of its multiple births policy has already proven to be utterly toothless. That is exemplified by a press statement on the HFEA website from 13 November 2013, in which it was conceded that IVF clinics would no longer be subject to a condition on their licence that they keep their multiple births rate below the HFEA target. As the press statement further revealed, this was in response to a legal challenge launched by two UK clinics,

“resulting in considerable cost to the HFEA”.

How much easier it will be for the HFEA to cave into those it is supposed to be regulating if it has to prioritise an economic growth duty.

Strikingly, an ensuing Written Answer from the noble Earl, Lord Howe, on 9 December 2013 stated the following in relation to the incidence of multiple births and the HFEA’s publication of clinic success rates:

“It is not clear whether additional powers of economic regulation would alter the HFEA’s influence on such practice”.—[Official Report, 9/12/13; col. WA 79.]

If the profit motives of some clinics already remain unchecked in a continuing environment of IVF postcode lotteries, how will this not be made even worse by having the HFEA join the fray in prioritising profit over protecting patient interests?

Although the HFEA chief executive, Peter Thompson, may be trying to make some modest efforts to combat,

“the rampant commercialisation of IVF in the UK”,

this seems limited only to “tentative steps” for increased transparency on the part of clinics and an expectation that others will bring about a change in culture. This does not exactly sound like an effective regulator, does it? If it is up to clinics to bring about a change in culture, what is the HFEA there for? The impotence of the HFEA is already serious enough as it is. As Dr Geeta Nargund, who I met recently, pointed out in a Huffington Post article that I would encourage noble Lords to read,

“no-one appears to be monitoring the drugs given to women during IVF treatment. Extremely high doses of stimulation drugs and intravenous immune therapy injections are administered to women by some clinics with no scientific evidence to support those practices. The HFEA do not collect information about drugs and dosages given to women, but we need this information to study any adverse effects of the drugs on women and their children in the future”.

How is the HFEA protecting the interests of patients if neither it nor anyone else is monitoring this? Dr Nargund’s concerns are only reinforced by the Written Answer I received from the noble Earl, Lord Howe, just yesterday, in which it was admitted that the,

“administration of medicinal products to patients undergoing fertility treatment ... is not regulated by the Human Fertilisation and Embryology Authority ... The HFEA has advised that it does not collect information on the identity of medicinal products used in treatment”.

But it gets worse. The same Written Answer received yesterday goes on to describe nevertheless how the,

“HFEA is aware of some clinics that have administered reagents to permitted gametes or permitted embryos that are then introduced into patients when the reagents concerned have not been CE marked. … Although the HFEA does not hold information on the effects of particular dosages on the welfare of the developing child and the health of the mother, the HFEA expects clinics to do such monitoring as part of their licensing conditions”.

It should be noted that we are not just talking about unlicensed medicines but about off-the-shelf laboratory reagents, most of which I gather would typically be labelled as unsuitable for clinical application. It should also be noted that no mention is made here of the sanctions imposed by the HFEA on clinics for putting goodness knows what into patients without knowing the effects,

“on the welfare of the developing child and the health of the mother”.

It therefore seems that as long as the clinic is responsible for whatever happens, the HFEA is satisfied.

In closing, I would like to reinforce what the noble Lord, Lord Hunt, said in relation to proposed interventions for mitochondrial diseases. Regarding the question of profit, it is noteworthy that a “competing interests” statement on a recent paper by Shoukhrat Mitalipov—belatedly added as a corrigendum—includes the admission that he has a patent application entitled:

“Method for mitochondrial DNA replacement in oocytes”.

My understanding is that researchers at Newcastle have no similar patent applications for pronuclear transfer, which is probably unsurprising because their proposed use of this technique is not original, having already been attempted in humans in China with woeful results. However, how would the economic growth clauses in the Bill affect the HFEA’s consideration of such licence applications? Would the HFEA be compelled to favour proposals for spindle-chromosomal complex transfer over proposals for pronuclear transfer on the basis of patent applications and potential profits to be gained? Or can the Minister please spell out clearly how the projected use of pronuclear transfer in admittedly limited numbers of clients could be seen as a contributing factor to economic growth, such that the HFEA would be seen as satisfying the economic growth clauses in the Bill?

I am sorry to have wearied the House with some of this but the point I am making is that these are complex and clear ethical, as well as medical and scientific, issues. This is not about things being driven by the state of the economy or deregulation, and it is a great error on the part of the Government to have included this in the Bill. I hope that between now and Third Reading the noble Earl will listen to what the noble Lord, Lord Hunt of Kings Heath, has said and give this much greater and more detailed consideration.

[Baroness Masham of Ilton (CB)]

My Lords, we should be protecting desperate patients from being ripped off by clinics whose main interest is to make money. I hope that the Minister will look at this again.

[Lord Wallace of Saltaire (LD)]

My Lords, this debate has ranged widely over a number of health issues, and I realise the seriousness of the issues that have been raised. Given that I am painfully aware of the cost of a new hip, and the noble Lord, Lord Winston, is telling me cost of IVF treatment is in the same league, there are some major questions. I am also conscious, partly as a result of conversations with the noble Lord, that the United Kingdom has identified biomedical research and development as one of the core areas that we want to develop. One member of my family is heavily involved in some of that. London, Oxford, Cambridge, Edinburgh and other places are centres of expertise, and this is therefore an important area in which aspects of economic growth are entirely relevant, but careful regulation also has to be part of it. The question of care homes has also been raised. That is another very broad area where sustainability, how far profit should be part of the process and how far we should be promoting mutuals are some other major questions.

Mental Health (Discrimination) Bill [HL]

Baroness Masham of Ilton Excerpts

Friday 25th November 2011 Lords Chamber

[Baroness Masham of Ilton]

My Lords, it is because my noble friend Lord Stevenson of Coddenham is bringing this Bill before your Lordships that I am pleased to say a few words in support. I knew my noble friend when he was chairman of the Newton Aycliffe and Peterlee new town corporation in the 1970s, on which I also served. He was an enthusiastic and energetic chairman and I had no inkling that he sometimes suffered from endogenous depression. Looking at his impressive CV, one can see that it has not affected his work performance in any way.

My feeling about this Mental Health (Discrimination) Bill is that people should not be discriminated against, but that they should be fit for purpose for whatever they do if it is a public service. Should a person have had a mental health problem, they may be better equipped to understand the population as a whole. I think that about one in three people will at some time have a mental health problem.

Because of time, I cannot say much that could be said. However, I am delighted that my noble friend will have a research trust. There is not enough research into the many difficult problems of mental health, including cannabis use. We must come to some conclusion over that. I hope that the Government are ready to help this Bill become law by giving it parliamentary time.