Phenylketonuria: Treatment and Support

Peter Aldous Excerpts

Tuesday 26th June 2018 Westminster Hall

[Peter Aldous (Waveney) (Con)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I congratulate the hon. Member for Blaydon (Liz Twist) on securing the debate and on championing so well the cause of PKU patients and their families and carers.

It is also appropriate to highlight the pioneering work of my hon. Friend the Member for Spelthorne (Kwasi Kwarteng). In an Adjournment debate on 1 December 2011, he highlighted his constituent’s problems in obtaining a Kuvan prescription. He successfully secured a prescription for his constituent, but it is most unfortunate, as we have heard, that six and a half years later we are no further forward in making this drug, which has the proven potential to change many people’s lives, more widely available.

Finley Walsh lives in Lowestoft with his parents, Michelle and David. He is two and a half years old and he was born with PKU—a genetic condition that will be with him for his whole life. All Finley’s foods have to be weighed, using a calculation that takes account of the amount of protein in the food. His parents have to take weekly heel-prick blood tests, which are sent to Addenbrooke’s hospital in Cambridge for analysis. The results are then sent to the Norfolk and Norwich Hospital, where dieticians phone through the results that enable Michelle and David to prepare Finley’s food intake for the coming week. That is a critical, delicate and often worrying process for them. It is vital to get Finley’s protein levels right; if they go too high, there is a real risk of brain damage.

The challenges that the family face daily are immense and place a real strain on them. Quite often, the blood test results do not come through on time and must be chased up. At present, they have had no feedback for two weeks. Food must be ordered on prescription to enhance Finley’s diet. Products such as those from Violife and Hooba are not only expensive but, quite often, not immediately and readily available. At present, there is also the worry that Finley was due to have a review with his specialist in May and that appointment has yet to take place.

Children with PKU suffer patchy care and support, which depends on where they live. That could be addressed by setting up specialised metabolic centres with an experienced metabolic physician and dietician. Psychological support should also be available in the centres to assist children if they experience learning difficulties and to ensure that they receive an education that enables them to realise their full potential. The centres could also administer prescriptions for PKU foods and dietary supplements so as to provide a more efficient service and to overcome the problems that the Walshes are experiencing.

On Thursday I, too, will take part in the PKU diet for a day challenge. In no way does that replicate the real experiences of people such as Finley, but I hope that together, we in this Chamber and around the House can highlight the need for modern treatments and better care for those who face such an enormous challenge daily.

Mental Health Services (Norfolk and Suffolk)

Peter Aldous Excerpts

Wednesday 2nd May 2018 Commons Chamber

[Dr Poulter]

I thank my constituency neighbour for that intervention. I entirely agree with everything he says, although I am not sure it is quite so pioneering—I think the hospitals in London would probably disagree with that. There is a lot of good work going on in London built around exactly that sort of model of more integrated care.

One of the challenges faced by the trust in the past, and which mental health trusts in general face, is the failure of many partner organisations to properly engage on issues such as the provision of adequate social care for patients with chronic and long-term mental illness and dementia. There is also the failure of housing providers to be involved and of the police to be properly involved. There is a big overlap between some people with mental ill health and presentation to the police, when they would be better looked after by the NHS.

This project is the right way forward, with more integration of services and better integration between mental and physical health. Many patients with chronic mental health needs have physical health problems. They are sometimes a side-effect of the drugs, but are often a result of a chaotic lifestyle. Better joined-up working with the local NHS undoubtedly has to be a good thing. For that to be effective, however, as we have seen in some pilot projects in London, there needs to be the funding to deliver it. The mental health trust is not in the best financial shape—I will come on to that later—and support from the Government through funding for this innovative way of working, which I think is certainly a first in a rural area, would be very welcome. I hope the Minister may be able to provide some reassurance on that this evening.

[Peter Aldous (Waveney) (Con)]

I congratulate my hon. Friend and constituency neighbour on securing the debate. Before he goes on to talk about the money, which is very important, does he agree that it is very important that the trust promotes and endorses local, tailor-made initiatives such as the trauma-informed approach currently being promoted in Lowestoft by mental health champions Tod Sullivan and Paul Hammond?

[Dr Poulter]

Yes, that is absolutely the right way to provide integrated services and joined-up care, because we cannot necessarily have a one-size-fits-all approach across Suffolk or Norfolk. We need to look at the local healthcare need. That is partly about working not just with housing providers, social services providers, primary care and GPs, as I believe is happening in my hon. Friend’s constituency, but with the voluntary sector, other third sector providers and local charities, many of which have knowledge of the needs of patients, families and carers. When we are providing joined-up, holistic mental healthcare, it is just as important to make sure that the approach is joined up and holistic in that regard, and I believe that the project in my hon. Friend’s constituency will have a very good chance of improving services for patients.

Deafness and Hearing Loss

Peter Aldous Excerpts

Thursday 30th November 2017 Westminster Hall

[Peter Aldous (Waveney) (Con)]

It is a pleasure to serve under your chairmanship, Mr McCabe. I congratulate my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick) on securing the debate. Colleagues have spoken very movingly about their personal experiences.

It is great to see my hon. Friend the Member for Winchester (Steve Brine) in his place as the responding Minister. I am sure he will do this ably, but it is an indication of the challenges that the hard-of-hearing and deaf community face that hon. Members have mentioned five Departments that have issues that need to be addressed: the Department of Health, the Department for Education, the Department for Business, Energy and Industrial Strategy, the Department for Culture, Media and Sport and the Department for Work and Pensions. That shows that by working in departmental silos, there is perhaps a danger that some of challenges that we are hearing about today are not being properly addressed.

My hon. Friend the Member for Poplar and Limehouse is a champion for the deaf and hard-of-hearing community. I will briefly highlight the work of another such champion, Ann Jillings, from Lowestoft, who is working with passion and determination to secure the best possible education for her son, Daniel. In doing so, she is campaigning for other parents of deaf children in north Suffolk. Daniel started at Bungay High School in September. He is doing well and there is good package of support in place for him, but Ann had to fight very hard to get that and she continues to campaign for a hearing impaired unit in north Suffolk.

It is clear that not just in Suffolk but across the country, deaf children do not get the right support right from the start, so they cannot always realise their full potential at school. That can put them at a considerable disadvantage for the rest of their lives. We need to break down these barriers and create a properly funded national framework, within which local education authorities such as Suffolk County Council can provide a good education and support service locally. If they do not do that, they must be held to account.

The National Deaf Children’s Society, which does great work campaigning for deaf children to have the same opportunities as everyone else, has highlighted four issues on which Government action is needed to break down the barriers that deaf children face. First, the NHS needs to improve the quality of children’s hearing services. The National Deaf Children’s Society highlighted in its Listen Up! campaign that, across the country, many such services have significant shortcomings and are failing to meet the necessary audiology standards. The quality assurance process that was previously in place has ended, and it has not been replaced by any other mandatory process.

The NDCS has a three-point action plan to address this particular problem. First, NHS England must ensure that the children’s audiology services that it directly commissions, such as for the under-fives, comply with the IQIPs—improving quality in physiological services—accreditation programme. Secondly, it is vital that that programme is more transparent, so that families know whether their services are good quality or whether they need to improve. Thirdly, the accreditation must be compulsory, so that all paediatric audiology services move towards running a good-quality operation.

My second point relates to access to radio waves technology for deaf children. Radio aids play a vital role in helping deaf children to hear speech; they enable them to better understand their teacher, and they have a big impact on improving parent-child communication. Despite the obvious benefits, most local authorities do not currently make radio aids available for use by families in the home. The NDCS is calling on local authorities and the Department for Education to ensure that every child who could benefit from a radio aid is given access to one at the earliest possible opportunity. To do that, the Department for Education should encourage local authorities to make use of their special provision capital fund, to provide radio aids where they are needed.

My third point relates to the need for a GCSE in British Sign Language. The Government really must listen to the right to sign campaign, to make British Sign Language available as a GCSE that can be taught in school. Ann Jillings points out that it is the first language of deaf children, so it is discriminatory that deaf children do not have the opportunity to achieve what is probably the most widely recognised qualification, and that it is given a lower status than other languages. There are other accredited qualifications in British Sign Language, but they are not widely available to children in schools and they are less likely to be recognised by employers. Daniel Jillings achieved his BSL level 1 three years ago, but it was not funded. Ann tutored him and paid for all the assessments herself. There is a compelling case for a GCSE in BSL, based on equality, the denial of choice for deaf children and the unnecessary barrier that it poses to further and higher education, and thereafter, entry to the workplace. That barrier must be removed. A GCSE has already been piloted and is largely ready to go. The Department for Education must make an exception to its blanket policy of not allowing any new GCSEs to be developed.

My fourth and final point relates to the special educational needs and disabilities framework. The Children and Families Act 2014 made significant changes to the SEND framework. One key change was replacing SEND statements with EHC—education, health and care—plans. The deadline for implementing those changes is April next year. There is a concern that many schools and local education authorities are struggling to implement the changes in time. In Suffolk, Ofsted and the CQC identified weaknesses in the county council’s practices in meeting the requirements of the Act.

Authorities such as Suffolk must be provided with sufficient funding so that they can meet their obligations. Although the high needs block, which funds SEND support, has been protected in cash terms, it has not been adjusted to reflect a variety of additional challenges: the rising number of children and young people requiring additional support; the greater local authority responsibility for young children with SEND aged between 16 and 25 and in early years; and a trend towards placing more children in special schools. More money needs to be made available and Ofsted needs to review how it can strengthen the accountability framework around SEND and how it inspects schools.

Ann Jillings has gone that extra mile and works tirelessly to ensure that Daniel gets the opportunity to have the best possible start in life and the best possible education, so that he can realise his full potential. There are many barriers that have been placed in her way in pursuit of that goal. I suggest that it is our duty, the duty of Government and of local authorities to remove those barriers as soon as possible.

Oral Answers to Questions

Peter Aldous Excerpts

Tuesday 14th November 2017 Commons Chamber

[The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)]

The hon. Gentleman raises an issue that is of concern to many women up and down the country, and no one can fail to be moved by some of the horrendous injuries they experience. We now have 18 centres of specialist care that can treat those women. However, the advice we still receive is that, in some very narrow cases of stress incontinence, mesh remains the best possible treatment. The issue will be kept under review, and my noble Friend Lord O'Shaughnessy is due to meet the all-party group on surgical mesh implants to consider it in greater detail.

[Peter Aldous (Waveney) (Con)]

T4. The James Paget Hospital at Gorleston, which is doing great work under great pressure, has highlighted the fact that it and the clinical commissioning group have two different regulators. Does my right hon. Friend agree that it would be sensible for one body to oversee both organisations, so as to avoid duplication and redirect funds to the front line?

East of England Ambulance Service

Peter Aldous Excerpts

Tuesday 25th June 2013 Westminster Hall

[Peter Aldous (Waveney) (Con)]

I will try to keep to your timetable, Mr Howarth, but if I do not, please intervene.

I am grateful to my hon. Friend the Member for Witham (Priti Patel) for this debate. In the middle of last year, it hit home to me that there are serious problems with the ambulance service and that they are placing people’s lives at risk. The trickle of complaints became a torrent. When an elderly lady suffered a stroke, the paramedics and rapid response vehicle arrived within 10 or 15 minutes, but the ambulance to take her to hospital did not arrive for another 105 minutes. A gentleman in Lowestoft fell off his bike and it took 90 minutes for the ambulance to arrive from Ipswich, some 45 miles away. A 90-year-old disabled gentleman fell at home when going to bed and his 84-year-old wife was unable to help him. It took four and a half hours for an ambulance to arrive.

Only in December did the ambulance trust agree to carry out a full review of operations, and that was when I spent two evenings with crews working out of the Waveney depot in Gorleston in the constituency of my hon. Friend the Member for Great Yarmouth (Brandon Lewis). Those evenings left me with three lasting impressions.

First, all the staff I met were dedicated professionals, but they were worn down by the pressures of the job. Their pleas for understanding to the trust’s senior management fell on deaf ears. On those two evenings, we were on the go from the moment we left the depot. There was no time for meals or comfort breaks, and I was told that 12-hour night shifts almost invariably became 13 or 14-hour shifts.

Secondly, it became clear to me that the trust did not have the right balance of vehicles on the road. There were too many cars and not enough ambulances. There is concern that the cars are used to reach patients quickly and to meet targets—effectively acting as clock-stoppers. If an ambulance is then required to take a patient to hospital, there can be a long delay before it arrives, and for a stroke victim that could be very serious.

Thirdly, based on what staff told me, it was clear that the handover delays at district general hospitals are a major reason why the service is not functioning properly. On the two nights when I was out, there were no problems at the James Paget hospital in Gorleston, and I pay tribute to David Hill, its interim chief executive, who will step down shortly. Whenever I am with him at the hospital to discuss the problem, he takes me straight down to A and E to see what the situation is like at that time and to get feedback from staff. His is the hands-on, at-the-coal-face, sleeves-rolled-up management that the trust should replicate.

Although there were not problems at JPH, there were problems at the Norfolk and Norwich hospital, which is a Bermuda triangle that swallows up ambulances. I do not want to place too much blame at the hospital’s door, but the development of a large hospital, albeit one that provides high-quality services and serves a large rural catchment area, means that a possible weak link is inadvertently created in the health system in Norfolk and Suffolk. It is important that the new management of the ambulance trust work with the Norfolk and Norwich hospital to strengthen that weak link.

Is it any wonder that the management have become so out of touch with their staff and the service they run when they set up their headquarters in a stand-alone, business park location in the middle of the fens? In effect, they are working in a vacuum. Surely they should be close to their operational centres where they can be in day-to-day contact with those who are working on the front line. That isolation may have contributed to their pursuit of foundation trust status when the service they ran was so clearly inadequate for the needs of their patients. They were fiddling while Rome burned.

There has been a failure to work properly with voluntary first-responder groups, which play a key role in working with professional paramedics in more isolated rural areas. Rumburgh in my constituency has a dedicated team of responders with the necessary equipment provided by successful fundraising activities, but it has been unable to work properly because it has been provided with no training, no accreditation and no up-to-date maps.

As to the future, I believe that a corner has been turned, but a lot of work is necessary. The trust’s turnaround plan includes 89 recommendations and there is concern that if they are addressed in a random, scattergun way the new board might achieve nothing. It must focus on the most important issues: patients and staff. Staff are the most important asset in any organisation, and that must be remembered as we go forward.

NHS Care of Older People

Peter Aldous Excerpts

Thursday 27th October 2011 Westminster Hall

[Peter Aldous (Waveney) (Con)]

It is a pleasure to serve under your chairmanship, Mr Betts. I congratulate my hon. Friend the Member for Stourbridge (Margot James) on securing this worthwhile and important debate.

The subject is of particular interest to me because the James Paget hospital in Gorleston serves my constituency as well as those of my hon. Friends the Members for Great Yarmouth (Brandon Lewis) and for Suffolk Coastal (Dr Coffey). As we have heard, the hospital has received two unfavourable Care Quality Commission reports and a red Monitor warning, and a third report is awaited. Although improvements have been made since the previous visits, there are still areas to address because elderly patients are not being given appropriate support with eating and drinking, and people in need of intravenous fluids are not getting infusions. I do not propose to go through the reports in detail, but I will highlight a few concerns that we need to address, not only in the James Paget but across the country.

My first point specifically regards the James Paget. The hospital’s main asset is its loyal and hard-working staff, including doctors, nurses, care assistants and the volunteers provided by the very good league of friends. There is a very strong team spirit, and it is vital that the staff, who want to provide the best quality care, are given the resources, training, support and leadership they need.

[Annette Brooke in the Chair]

My second point is about funding. A particular issue in an area such as ours—we have heard from my hon. Friend the Member for Suffolk Coastal—is that Suffolk and Norfolk is a popular area to retire to, and that puts pressure on the hospital. In Yarmouth and Lowestoft, there are pockets of deprivation, and the area is a popular holiday destination. Four or five years ago, when my late father was in the James Paget, he was probably one of only two local people on a ward of eight. That is an indication of the challenges that the hospital faces, and I hope that its funding generally takes that into account.

Hospitals need not only to tackle excessive bureaucracy but to look at areas of staff shortages. If the NHS is to survive, it must tackle social care, because otherwise we will face the prospect of more and more older people in hospital beds, creating a logjam and bringing the system to a grinding halt. It may well be that we should divert funds from the acute hospital sector and into adult social care to cope with the rising costs of health care and an ageing population; it is important to make savings wherever possible.

I do not like saying this, but there is a sense of déjà vu here. This debate is very welcome and we are all approaching the matter in the right way, but I sense that we have been here before. The CQC findings are similar in many respects to those in the Secretary of State’s 1998 report, “Not because they are old”, and there are parallels with the Patients Association study of two years ago. It is as if each new revelation creates a sense of outrage, and then nothing happens. We all have an obligation to ensure that this time is different.

There is perhaps an institutional ageism in our society to the extent that at times we do not understand the needs of the elderly, and are too condescending and dismissive. That needs to be replaced with a sense of kindness and compassion, with patients’ dignity respected. We should treat patients as people, not processes; perhaps in the past, in a drive to meet targets, patients were seen as procedures to be processed. There is perhaps a problem of patient care getting sidelined by targets, by finances and bureaucracy. The delivery of care has perhaps been regarded as a task to be completed, but it is a vocation, not a unit of work. More training and staff development is needed, with patient care at the centre of things.

On leadership and support, we must create a different culture in which good care flourishes. Leaders and managers in hospitals should work closely with staff in proper liaison. It should be a two-way relationship. Staff must receive the right support, and management must ensure that budgets are spent wisely.

Over the years, a poor understanding of malnutrition has crept up. There is a lack of awareness of the importance of good nutrition. Malnutrition costs the NHS £13 billion per annum. Inadequate food is a problem, as are inflexible regimes and a failure to meet basic physical care needs, which causes patients to become lonely and bored. Similar problems exist in some care homes; lack of attention to detail is a problem. Hospital food can at times be unappetising and unpalatable. We must examine food budgets closely. Are they too low? Should they be higher?

We need a fundamental look at the issue. The CQC does valuable work, but it cannot go back all the time, so we must consider giving patients an advocate who can fight their corner. Local HealthWatch organisations that carry out unannounced inspections have a role to play. Publication of malnutrition rates should also be mandatory, so that people can discover problems earlier and notify where they might be occurring.

Finally, I will mention an issue that is not the topic of this debate but is an elephant in the room: social care for our elderly in their last days. We need to integrate the health service and social care. The Dilnot report presents an opportunity to address a time bomb that has been ticking for a long time and that successive Governments have not grappled with. I hope that, in the spring, the Government will face up to reality and publish a positive response to what Andrew Dilnot said.

End-of-Life Care

Peter Aldous Excerpts

Tuesday 28th June 2011 Westminster Hall

[Peter Aldous (Waveney) (Con)]

It is a pleasure to speak under your chairmanship, Mr Walker. I am grateful to my hon. Friend the Member for Great Yarmouth (Brandon Lewis) for securing this debate on a topic of such importance to our two constituencies, and to the northern part of the constituency of my hon. Friend the Member for Suffolk Coastal (Dr Coffey).

My hon. Friend the Member for Great Yarmouth has set the scene admirably. I shall make a few observations based on my own finding and experiences in the past year representing Waveney and over the past 40 years as a resident of the area. I will outline five distinctive health features in the area that place a burden on the NHS generally and on end-of-life care more specifically.

First, Lowestoft and Great Yarmouth include pockets of extreme deprivation which are not immediately apparent to those with only a passing knowledge of Suffolk and Norfolk. Secondly, a high percentage of the population is elderly; the East Anglian coast has long been a popular retirement area. I do not begrudge people moving into the area—in fact, I welcome them—but the Government must recognise that they are an added financial cost for those providing health services, and that must be reflected in the funds made available. Thirdly, the influx of holidaymakers in the summer months is an added pressure. I well remember visiting my father in James Paget hospital some 10 years ago and observing that many of those in his ward were not local to the area.

My fourth point, with regard to where people die in the Great Yarmouth and Waveney area, is the limited hospice provision. In England as a whole, 5.2% of people die in a hospice, but in our area only 0.1% do. In the west of the Waveney constituency, those in the Bungay area are well served by the excellent All Hallows hospital at Ditchingham, but there is a glaring lack of a similar facility in the Great Yarmouth and Lowestoft area. East Coast Hospice, of which my hon. Friend the Member for Great Yarmouth and I are both patrons, is determined to redress the balance, as he said. It has a lot of work to do, however, and it is vital for the Government to ensure an environment and climate giving it every assistance and encouragement as it sets about its task.

Finally, despite the lack of facilities in the area, we have a tremendous community spirit, with many voluntary groups and charities doing all that they can to provide services and to raise funds. As well as All Hallows and East Coast Hospice, we have Waveney Hospice Care, which is merging with the St Elizabeth hospice, and does great work providing day care. Palliative Care East has reached its target for providing day care and support for those using the James Paget hospital, and East Coast Truckers continues its sterling efforts to raise funds for East Anglian Children’s Hospices.

Moving on, I will outline three areas of end-of-life care in which we must do better. First, as I mentioned, more hospice care is needed—my hon. Friend set that out clearly. Secondly, linked to that, is the urgent requirement for more respite beds, so that carers can get away for a much-needed break. Last Friday, I was with Crossroads Care, which reinforced that point.

[Dr Thérèse Coffey (Suffolk Coastal) (Con)]

I congratulate my hon. Friend the Member for Great Yarmouth on securing the debate and my hon. Friend the Member for Waveney (Peter Aldous) on his contribution. Does he agree that, although we do not have the range of choice, we ought to pay tribute to places such as Patrick Stead hospital in Halesworth, which manages to provide some respite care but could easily provide more if the funding were available?

[Peter Aldous]

I agree entirely. The Patrick Stead is my local hospital, so I also endorse its excellent work.

The third area is the need for the provision of 24/7, around-the-clock community care, which must be a priority. It could provide people with the option to spend their last days in their own homes, with their families and friends, which so many people wish to do. My father, who died last year, died in hospital and not at home. For my mother, who cared for him in the last few months of his life, the availability of such a service would have made her job as a carer that much easier.

In conclusion, what am I looking for from the Government? I want two things: first, a fairer funding settlement, to address the needs that I have outlined briefly; and, secondly, a system or framework that enables the voluntary and charitable sector to work with and flourish alongside the NHS. The Department of Health tends to distinguish only between the NHS and private providers, but the third sector must not be forgotten and it must be set free to flourish without the bureaucracy that currently bears down on hospices and carers.