Autism Act 2009

Baroness Browning Excerpts

Monday 26th March 2012 Grand Committee

Asked By

[Baroness Browning]

To ask Her Majesty’s Government what assessment they have made of the implementation of the Autism Act 2009 and associated autism strategy.

[Baroness Browning]

My Lords, I am very grateful to all noble Lords showing an interest in this debate this afternoon, and particularly to the Minister, who I know takes the Autism Act 2009 very seriously. I have brought it forward at this time because the Act needs to be kept under review. There are certain aspects that I want to air today particularly as far as the implementation of the strategy is concerned. I hope that the Minister will be able to take away some of the concerns that I have about it.

It is important to re-emphasise that this Act, introduced by my dear friend the right honourable Cheryl Gillan MP in another place, is the first, and I believe only, condition-specific legislation on our statute book. As a result, we have a particular regard for the reason why it came about. It was because, as a spectrum, autism is a complex condition, which has only begun to be understood in recent years, and because even those who present as more able on that spectrum can deteriorate in areas of mental health, particularly when they progress from childhood to adolescence and then on to adulthood, if they do not receive the appropriate packages of support, much of which will need to be lifelong for many, even the most able. It was for that reason that Parliament singled out the condition of autism in order to put this legislation on the statute book. The Department of Health has responsibility not just for implementing it but for overseeing it, so that this legislation carries out Parliament’s wishes in the responsibilities of the Secretary of State to,

“prepare and publish … a strategy for meeting the needs of adults in England with autistic spectrum conditions”,

and to issue guidance to local authorities and health bodies to secure the implementation of that strategy. There is also a duty on local authorities and health bodies to act under that statutory guidance.

I would like to begin by raising issues that are in the current strategy, on which I hope my noble friend will be able to answer my questions or, if not, to write to me afterwards. The first is to do with partnership boards. Page 29 of the guidance raises the matter of partnership boards, but in the guidance these are not to be required in every circumstance; there is simply a requirement for partnership boards to be there and to be a body where people with autism and their families could participate. It is not statutory that they should. Will partnership boards be monitored in terms of their being set up, and what is the Government’s position now on partnership boards including those with autism and their families? We know that this is one of those conditions where carers and those who can self-advocate in particular are in a key position to add to what is needed in their own services.

I would also like to raise with my noble friend the question of IQ, on which I have put down Written Questions. Page 15 of the guidance states:

“Assessment of eligibility for care services cannot be denied on the grounds of the person’s IQ”.

This is a very old problem which particularly affects those who present with Asperger’s or the more high-functioning Kanner’s autism. I apologise; I should have declared my interest as vice-president of the National Autistic Society. Having been in another place for 18 years, I have dealt with a lot of casework—not just my own but also that of other Members of Parliament. IQ has been the reason social services and other statutory bodies have denied people on the spectrum the right to an assessment and thus to appropriate services; I must tell my noble friend that I still receive casework of this nature today. The practice is clearly now illegal. In fact, I believe it was illegal under existing legislation affecting social services and their requirement to assess people. I ask my noble friend to take an interest in this, particularly for people who have previously been assessed but did not necessarily have IQs under 70 which would have determined them as learning disabled. It is still a problem in some areas. This legislation should have put a halt to that: my interpretation of the strategy is that it is quite clearly illegal.

I also raise with my noble friend the matter of diagnostic leads in NHS bodies, featured in the guidance. Page 15 states that there will be a clear pathway to diagnosis in every area by 2013. Page 16 goes on to say that:

“Each area should put in place a clear pathway for diagnosis of autism, from initial referral through to assessment of needs”.

Page 15 also states that,

“the end goal is that all NHS practitioners will be able to identify potential signs of autism, so they can refer for clinical diagnosis if necessary”.

I know that we are waiting for NICE guidelines to be published on this. I do not know whether the Minister can give us some indication of the timeline as far as the NICE guidelines are concerned. However, in view of the omission in the guidance of foundation trusts and the implication of the Health and Social Care Bill regarding the bodies which will replace PCTs, I wonder whether my noble friend could tell me how the requirements of the autism strategy are going to be met. Are we in danger—and I hope I am wrong in my interpretation of this—of having postcode lotteries in terms of the requirement of the strategy? For changes in health service organisation, those requirements under pages 15 and 16 may well not be achieved as far as the health bodies are concerned. How are these diagnostic leads and their work to be benchmarked? In other words, how are we to assess how capable they are of doing that work? How are we to assess the geographic spread, bearing in mind that there are many cases of autism among adults that are quite complex?

I am not saying that it is easy to diagnose. Diagnostics across the autistic spectrum, including for children, require people with experience of working regularly with those people. However, by the time people enter adulthood—and sometimes people present quite late in life—there can be really complex needs. A mental health condition commonly overlies an autism diagnosis. I point out to my noble friend for the record—I know that he will know this—that autism is not of itself a mental health condition. However, we know—this applies as much to the more able end of the spectrum as to those with more complex Kanner’s autism—that many learning to get by in life as adults often present very strange behavioural patterns. These are not necessarily psychotic but all too often people who are inexperienced in diagnosing find it difficult to disaggregate rather strange autistic behaviour—I choose my words carefully—from what might sometimes be misinterpreted as a psychotic basis of need following a clinical psychiatric diagnosis. Sometimes, of course, both conditions apply and sometimes it gets more complicated than that. What I am really saying to my noble friend is that I am concerned about these diagnostic pathways, who will be doing them, how we will benchmark their qualifications and the quality of the pathways, and how they will be provided given that foundation trusts are not listed in the strategy and that changes are to be made to the structure of the health service through the Health and Social Care Bill.

The other matter I want to raise concerns the professional training of local authority staff. The end goal is to have staff with clear expertise in autism within each area. I am very nervous of tick boxes. I do not want to see a situation where people who have been on training courses tick boxes but we are unable to define what expertise they have or their interface with the autistic community. Therefore, I hope that my noble friend will find a way of evaluating this training to ensure that it is not just a tick-box exercise.

I am looking at the Whip, as I am sure that she will call me to order fairly soon. However, I want to raise a final matter.

I asked my noble friend Lord Freud whether his department had conducted consultation on the Autism Act before introducing the Welfare Reform Act. The Autism Act is a unique piece of legislation. The Department of Health should check whether new legislation that is brought forward by other government departments affects the provisions of the Autism Act. I am concerned about changes being introduced in housing legislation that affect the under-35s and how the strategy for moving towards independent living will work. I do not know whether my noble friend can tell me what discussions his department has had with the DWP but I am seriously concerned that judicial review will be instigated following what I regard as severe defects in other legislation that clearly has not taken the Autism Act into account. I hope that, as the Minister in charge, my noble friend will make it his responsibility to ensure that this does not happen on an ongoing basis.

Health: Stroke Care

Baroness Browning Excerpts

Monday 30th January 2012 Lords Chamber

[Baroness Browning]

My Lords, I, too, welcome the opportunity that the noble Baroness, Lady Wheeler, has given us to discuss this subject. I was a member of the Public Accounts Committee in 2006 when we received the National Audit office report, and again in 2010 when we reviewed the progress of that report. It is concerning to think that some of the concerns of the Public Accounts Committee in 2010 were picked up in the CQC report. I will pick up on one or two of them.

We in the Public Accounts Committee said:

“The Department lacks evidence about what types of post-hospital support and long-term care are most effective for stroke patients and does not have a clear plan as to how such care should be funded”.

I hope that my noble friend this evening will be able to assure us that that has been taken on board, particularly in the light of the changes to the health service. Also, despite 11 per cent of stroke patients being newly admitted to care or residential homes after their stroke, there is little understanding of what services stroke patients need in these settings. As a former constituency MP, I know not only that stroke is life-changing but how much more so it is when somebody one day has a stroke at home and never goes back to that home, instead going into nursing or residential care. I hope that that group of people will not be forgotten and that my noble friend will address them as well.

There is also the question of the joint care plan, which is picked up in the CQC report, and particularly, as part of that care plan, the need for regular reviews. I think the point was very well made about this two-year cut-off point. In fact, the CQC report shows that those plans which incorporate the structure of six-week reviews and six-monthly reviews are not only ongoing but that the best quality care is usually delivered as well. Yet we see that only two-thirds of people had six-weekly reviews, 44 per cent had six-monthly reviews and only one in 10 information packs given to patients on discharge mentioned the reviews at all.

At the UK stroke forum in December last year, the Secretary of State for Health announced that work will begin this year on the development of an outcomes strategy for cardiovascular disease. Will the outcomes strategy for cardiovascular disease replace or complement existing national strategies, such as the stroke strategy? How will it focus on the areas most in need of improvement, such as longer term care and support for stroke survivors? I hope that when he replies my noble friend will also be able to tell us what progress has been made on the development of the outcomes strategy for cardiovascular disease.

Nursing

Baroness Browning Excerpts

Thursday 1st December 2011 Lords Chamber

[Baroness Browning]

My Lords, it is a great pleasure to follow the noble Lord, Lord Hunt of Kings Heath, with whom I have debated many issues in this Chamber.

I agreed with every single word that he said in this debate. I stand in awe of what he has done in his trust. He recounted the list of things that had been implemented, not all of which seemed to need an awful lot of money, although I understand what he said about education and training. You wonder why such practice cannot be rolled out around the country and why exemplars cannot be picked up rather than having trusts that try to reinvent the wheel, struggle or in some cases attract rather adverse headlines, as we have seen in recent years.

I had the great privilege to serve as a Member of Parliament for 18 years in another place. During that time I had the pleasure of working with and for nurses and midwives in my constituency, many of whom came to see me to discuss the problems that they encountered in their work. Sometimes they came individually and sometimes collectively. I pay tribute to the work that the profession does. There are people out there who go that extra mile. As patients or relatives of patients, we should all be extremely grateful to them for that. I know that I am.

However, as has been mentioned by other speakers, healthcare, which includes the nursing profession, has been the subject of some very worrying and adverse headlines, not just in recent weeks but for a long time. Some eight years ago in a debate in another place I raised concerns about nutrition and fluid intakes based on my personal experience of having an elderly relative in a hospital. It seems to me that these things have gone on for a very long time. Mencap still has concerns in this regard. Three years ago it published a report, Death by Indifference, which discussed people with learning disabilities who had died on hospital wards not through disease but through neglect. That is an indictment of us as politicians and of our nation. Members of the nursing profession and others involved in healthcare must feel that very keenly when they see and read about what is happening.

As I listened to the noble Lord, Lord Hunt of Kings Heath, I wondered how hard it would be to make best practice universal if there was a political will and a professional will in all parts of healthcare to look at what works and to implement best practice. I realise that budgets come into these things and that there are always differing opinions on how to do things. However, we are starting to see some common themes coming through, not least in the report Front Line Care, which the noble Baroness discussed. There is a common theme in this report. There is great confusion in the healthcare system, particularly in hospitals, and we as patients are also confused. It is quite possible to go into a general hospital ward and come away still not really knowing who was in charge. It is the uniforms, it is the way people conduct themselves. It is not that people are not doing their job, but you cannot always say who is in charge.

The heading on page 60 of the report says, “The Proliferation of Roles and Titles”, and I would add uniforms to that. At one time I thought I understood all the uniforms on a ward, but I have to say that I do not now. Having been in hospital this year, all I can say is that the lady in the pale blue uniform did a jolly good job for me, but I still do not know what her job title was. The report says:

“especially doctors … were often unclear about what skills and competencies they could expect from individual nurses and support workers, exacerbated by the plethora of job titles and role descriptions”.

It is bad enough that I as a patient was confused, but the fact that doctors are also confused tells us that something needs to be sorted out, and urgently.

Much more seriously, if doctors do not know what they can expect from these different job titles and uniforms, and if the nurses themselves have to delegate—I will come on to delegation in a moment—it is no wonder that there are problems and that some of them become systemic. I say to my noble friend, for whom I have great respect for the work he does on the Front Bench, that these problems are now systemic and need to be treated as a matter of urgency.

Frankly, we do not need another five years of reports and anecdotal evidence. It seems pretty obvious that some people are now overcoming these problems—the noble Lord, Lord Hunt, explained what happens in his trust—and this could now be rolled out. While I understand the need for localism and local decision-making, the Government have to take some leadership in making sure that this is rolled out and that they act as the catalyst to ensure we do not have the same debate in five years’ time.

I return to the subject of nurses and the nursing profession. I agree with noble Lords who have said that it does not necessarily follow that because someone has a degree in nursing, they lack compassion. That is a rather terrible thing to say. However, there is a question about the structure of nursing, which yet again is picked up very well in the report on page 87, under the part entitled “The Way Forward”. The report says:

“There was much comment on the style of leadership needed for the future. ‘It’s to do with whether we’re transactional (you will do this, that or the other—talking down to staff)”—

the Hattie Jacques scenario, I suspect, although a lot of people would quite like to see a few more Hattie Jacques on the ward—

“or transformational leaders (embracing staff and recognizing skills and contributions)’”.

The report goes on to talk about mutual respect, not working in silos, and working as a team. Anyone who has worked in any large structure, whether in healthcare or elsewhere, will recognise those two different styles of management, although I have to say that it does not have to be one or the other. Leadership is about taking difficult decisions and about looking holistically across the whole. I quite agree with colleagues who have said today that those in charge of a ward should also have the authority to deal with nutrition and cleaning. I remember a debate in a German hospital, where the wards were absolutely spotless, about whether cleaning services should be contracted out. The question was asked, “How do you make sure that these wards are so absolutely spotless?”. The reply was that the cleaning was contracted out but that the person in charge of the ward was able to stop the payment of the contract if they were unhappy with the results. That is the sort of authority and leadership that is needed on a ward, and it should be placed with an individual. This is not rocket science. If we had the collective will to implement that, it could be done tomorrow.

Nurses also have to delegate. I was very interested to hear Tony Hazell giving evidence on Tuesday to the Health Committee, which is holding an inquiry into education, training, and workforce planning. He said that there will be more training, both for nurses and for healthcare workers to whom nurses delegate. From this report, it is clearly rather important that everyone in the structure knows and understands their role, and that people are prepared to delegate so that they are not working in silos. In-service training is also important for nurses working in hospitals, out in the community and elsewhere, as well as for those who are not nurses but who work in a supportive role. If such ongoing training were in place, we would not get the horrendous stories, which I have personally experienced on more than one occasion and with more than one person, of food being left at the end of the bed for someone who cannot access it. In-service training and education throughout is important, and it will also help nurses.

Finally, it is important that where there are serious problems, nurses should be able to report colleagues in a structured way. It is called whistleblowing—a horrible term—but in my experience, where really good nurses experience this and hit the buffers in trying to report problems, too many of them leave the service. They find it just too difficult and too unpleasant. We have to build that into the structure when we come to reform these services.

Herbal Medicines

Baroness Browning Excerpts

Thursday 13th January 2011 Lords Chamber

[Baroness Browning]

Is my noble friend aware that it is common practice in many GP practices to make recommendations for alternative medicines, such as tea tree oil for ingrowing toenails and arnica cream for bruises? In my former constituency, one GP practice actually grew its own herbs in the garden.

[Earl Howe]

My Lords, it is a long-standing practice and tradition in this country that medical professionals should be able to take it upon themselves to prescribe freely, as they see fit, in the interests of the particular patient in front of them.

Autism

Baroness Browning Excerpts

Tuesday 7th December 2010 Lords Chamber

[Earl Howe]

My Lords, I should be very happy to meet the noble Lord to discuss those issues. Although we do not have definitive figures for the number of people with autism in England, we have commissioned a study into the prevalence of autism among adults to inform strategic planning at central and local levels to benefit adults with autism as they access public services. We have commissioned that study from the University of Leicester and it is due to report by March 2011.

[Baroness Browning]

Can my noble friend confirm that part of the strategy will entitle people on the autistic spectrum to an assessment if they have an IQ of over 70? For many years, Department of Health circulars have given them this entitlement but they have been ignored in most parts of the country by social services departments. How will my noble friend ensure that this new strategy is properly implemented and that people with IQs of over 70 get the assessment to which they are entitled?

[Earl Howe]

My Lords, I am very grateful to my noble friend for raising that issue. I can reassure her that under Section 47(1) of the National Health Service and Community Care Act 1990 local authorities have a duty to assess a person who may be in need of community care services. This duty applies to people with autism. The revised Fair Access to Care Services guidance already makes it clear that an assessment of eligibility for care services cannot be denied on the grounds of a person’s IQ. We intend to reiterate this very clearly in the autism statutory guidance.

Public Health

Baroness Browning Excerpts

Tuesday 30th November 2010 Lords Chamber

[Earl Howe]

My Lords, the training of the workforce will be key—I would not disagree with the noble Lord on that question. This is a matter on which we are focusing very closely. I will need to write to the noble Lord on the specifics of his first question because the figures are not in my brief, but we are clear that, without the necessary workforce to deliver the public health programme on the ground at local authority level, we will not be able to see the improvements that we need. That will be a major focus for my department.

[Baroness Browning]

Does my noble friend recall in “Dr Finlay’s Casebook” the role of Dr Snoddie, the very independent but suitably qualified director of public health, for want of a more modern phrase? When my noble friend comes to look at the qualifications for directors of public health, will he ensure that they have the appropriate qualifications, so that we do not repeat what has happened elsewhere in the health service, with a generation of administrators who override the clinical judgments of those who are more medically qualified to take decisions?

[Earl Howe]

My noble friend takes me back to happy days watching “Dr Finlay’s Casebook”. I seem to remember that Dr Snoddie always had an encounter with Mistress Niven, who came down with all manner of complaints and ailments that the redoubtable duo usually diagnosed and dealt with.

My noble friend is correct. We have to ensure that we have the right people trained at the right level to deliver this service and that we do not get bogged down in managerial bureaucracy. Health and well-being boards will be a vehicle for public health, social care, the GP consortia, when they are formed, and the patient organisations, such as HealthWatch, to come around the same table, so to speak—maybe literally—in order to look at the broader health needs of an area and decide on priorities. I see that as powerfully playing into the public health agenda. This will be far from being a process that is bogged down in bureaucracy.