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Augmentative and Alternative Communication Services

Volume 563: debated on Thursday 6 June 2013

Motion made, and Question proposed, That this House do now adjourn.—(Mr Syms.)

It is a pleasure to speak in this debate on this very important issue. I mean no disrespect to you, Mr Deputy Speaker, but it is a shame that Mr Speaker is not in the Chair, because he has been a great champion of speech, language and communication needs down the years. It is worth quoting his key comment from the Bercow report:

“'Communication is crucial. Recognising that is right in terms of equity for those in need and right in the national interest as we all wish to cut the costs of failure”.

Nowhere is that clearer than with augmentative and assistive communication. As that is rather a mouthful, I shall refer to it as AAC.

AAC is a series of aids, some complex and some not so complex, that assist those with neurological conditions that make it hard for them to express themselves. I was delighted when I received a commitment from the Prime Minister during Prime Minister’s questions in March that, as a result of the new commissioning landscape in the NHS, it would be available to more children and adults. I welcome that, and my aim is to ensure that it can actually happen.

I have a personal interest in this subject; it is not something I acquired when I was elected. I attended Hebden Green special school at the age of just three or four, and many of my fellow pupils would have benefited from these complex aids. It gives me real pleasure that one of my pupils, Alexis Egerton, recently gained a PhD thanks to utilising a complex powered aid—an example of how AAC can change people’s lives.

I am grateful to the Minister for the time he was able to spend yesterday meeting me and representatives from Communication Matters and the ACE Centre. I apologise for detaining him further today with a variation on the same theme. It is worth focusing on how the users of the aids feel about how the system currently works. Toby Hewson is an AAC user. He said:

“I cannot express adequately how frustrating it is for people with disabilities to have to battle with the system in the way we are forced to do...like a game of pass-the-parcel, people like me are sidelined and marginalised until we are exhausted.”

That is just an indication of the frustration so many people, and their families, feel about a system that has not yet worked properly for them.

I would be misleading the House and unfair to the Government if I did not make it clear that a great deal of progress has been made, not least through the Bercow report, the work of communication champion Jean Gross and the decision to ensure that most of the commissioning will occur at a national level. I hope that the Minister can act like a statin in the arteries of NHS England to allow what is good to occur, and for policy to be implemented in the way that I am sure everybody in the Department of Health wants it to be implemented.

However, I would also be misleading the House if I did not express some of the concerns about how policy is being implemented. The issue can be as fundamental as the funding mechanism deployed. I am sure that we would all agree that NHS England has to start from somewhere in deciding how much money it will allocate to this type of provision. I am reminded of the farmer leaning over a fence who is asked by a walker, “How do I get to Blackpool?” He replies, “Well, I wouldn’t start from here.” I would not start from where NHS England is starting, because it intends to use historical budgets, which might sound perfectly sensible—perfectly obvious perhaps—but if all that involves is ringing up a local hospital manager and asking how much he spends on AAC, when he might not even know what AAC is, I do not think it a particularly satisfactory starting point.

It is more frustrating still given the work done on levels of need by the communication champion—available to NHS England—and further reports since from the University of Manchester. We know the level of provision and unmet need: 0.014% of the population currently use a powered aid, but total need is 0.05%. I am sure that the Minister can do the maths. It is about 3.5 times what is currently being funded. I am not making the predictable everyday point that more must be spent—far from it—but I want NHS England to begin from a sensible starting point when making its decisions.

I am grateful to the hon. Gentleman, my constituency neighbour, for giving way. I warmly commend his work to bring this matter to public attention. He and I have constituents at Highfurlong school and other special schools in Blackpool where these issues are very important. I have had correspondence from two constituents involved with the school. I know that Governments are not always keen on ring-fenced budgets. Does he agree, however, that NHS England should take account of the technology to come, rather than relying on past practice?

Indeed. We disagree on many things, but on that issue the hon. Gentleman and I can agree. In Highfurlong, we have an excellent provider of specialist communication provision, so I hope he shares my concern at the proposals, which look to be coming from the local council, that could result in Highfurlong being shut. It causes me great concern, as it does many parents in his constituency and mine, so I hope he will join me in ensuring that Highfurlong is not threatened in the way it might be.

The funding decisions being made have consequences for the proposed hub-and-spoke model. I would welcome a commitment from the Minister that clinical commissioning groups should not interpret the existence of specialist hubs as a justification for winding down their investment in local spokes. That, to me, is crucial, if only because of the issue of complexity. The hon. Member for Blackpool South (Mr Marsden) alluded to that.

Does my hon. Friend agree with me and my constituents with children using these important assisted technologies that what matters is not just providing the equipment, but the cost of providing training and support, without which children and adults cannot benefit fully from these important technologies?

I thank my hon. Friend for that perceptive contribution. The concern is that NHS England’s budget for AAC will not be sufficient for training. The only way that the hub-and-spoke model can work effectively is if the hub can train up more people in the spokes to deliver the more complex tools. Complexity is at the heart of the problem in the structure. AAC is one of five areas for which complex disability equipment is to be commissioned nationally—incidentally, another is artificial eyes, the national centre for which is based in my constituency. It would be remiss of me not to congratulate that centre during an Adjournment debate on a parallel issue. As I was saying, though, complexity is the key: it determines whether a patient is treated at the hub or at the spoke.

A stroke patient will receive a relatively straightforward medical diagnosis—it might be a devastating incident in their personal life, but its medical nature is relatively simple. None the less, what will restore the power of communication to someone who has lost it will be a complex piece of kit, yet under the current rules, as I understand them, it would be commissioned in the spoke. If the skills are not there to utilise that piece of equipment, that stroke patient will not benefit, so complexity of need has to be balanced by the complexity of the product being supplied. That is crucial.

The other issue on which I want to draw out the Minister is the concerns of worried providers in the voluntary sector about their ability to bid for commissions from NHS England. There has been a long-running battle over whether AAC should be based in the education or the health sector. It is now clear that it will be based in the health sector, but one of the key elements of what NHS England seeks to commission is an educational component in a multi-disciplinary team. That component is most often found in organisations such as the ACE Centre, the Dame Hannah Rogers Trust, near the constituency of my hon. Friend the Member for Totnes (Dr Wollaston), or the Percy Hedley school, up in the constituency of the hon. Member for Blaydon (Mr Anderson). They all have immense expertise, yet they greatly fear that the mood music emanating from NHS England suggests that they will be unable to bid for such provision, because of an understanding that it must be supplied by an NHS provider. That seems strange, given all that the Government have said down the years about trying to ensure a broader spectrum of provision—that more civil society organisations can provide such services. I hope the Minister can provide some reassurance on that.

I would also like a commitment from the Minister—this is another fundamental aspect—that this really is a health issue and no longer just an education issue. I hear far too many heartbreaking stories of children who are equipped with complex equipment when in school but, because it is funded by the Department for Education, lose it when they leave. It is not just a piece of kit they are losing; it is their ability to express themselves as fully formed adults. That is why it is so important that this becomes a health issue, not just an education issue.

My final query is rather technical—I beg the Minister’s forgiveness, but this goes back to acting like a statin in NHS England. A clinical reference group has been set up, but it has yet to meet—it is in a form of limbo, as it were. There is yet greater uncertainty, not merely because it has not met, but because the gentleman who chairs it, one Dr Thursfield, is shortly to retire from his academic post at the University of Birmingham. There is grave concern that his uncertain status in the clinical reference group is imperilling its ability to meet, take decisions and do its job. Alexis Egerton—the gentleman I mentioned earlier—was disappointed not to be appointed as a patient representative on the clinical reference group. I have known Alexis since my youngest days. He did his PhD on the funding of AAC provision, and it would be immensely valuable to the Government and the nation as a whole if we could find a way to allow him to play a role in that.

Finally—I want to ensure that the Minister has time to respond fully—will he bear in mind that the right to have a voice is a fundamental human right? We have an opportunity in this place to represent our constituents. If, in doing so, we give a voice to some who hitherto did not have one, we will have spent a useful half-hour in this debate. I look forward to hearing the Minister’s response.

On a point of order, Mr Deputy Speaker. I apologise to hon. Members for having to raise this point of order at the end of a passionate speech in an important debate. I seek your guidance, Mr Deputy Speaker. Today I had a telephone call from someone in the press asking me to comment on a parliamentary question I had asked and for which they had the answer. Unfortunately I was not party to that answer, as it had not been delivered to me. When I contacted the Table Office, it could not elucidate either. I was, however, able to obtain a scanned copy from the press. Would you agree, Mr Deputy Speaker, that this is not the way to conduct business and ensure that Members are appropriately briefed?

It certainly is not good form; in fact, it is very bad form. The Member should always know at least at the same time, but preferably before. The matter is now on record and I hope that those on the Front Bench will pass it on, so that we can get to the bottom of it.

I am really grateful to my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) for raising this issue, and for his work, together with that of colleagues, as a member of the all-party parliamentary group on speech and language difficulties. An occasion such as this is particularly valuable, as was the meeting that we had yesterday, in ensuring that Ministers focus on issues that might otherwise not get attention. I learned a lot from the meeting yesterday, and from my hon. Friend’s impassioned speech today. He clearly speaks with real authority on this subject. I was struck by his point about the lad who ended up with a PhD as a result of the support that these facilities can provide. He made the point very powerfully that they can change lives.

Augmentative and alternative or assistive communication is one of the more specialised areas of health and education provision. The number of children who will require support in this way is relatively small, perhaps less than 0.5% of the population, so it is important that we do not lose sight of them. My hon. Friend rightly made the point that the ability to speak and communicate is a pretty basic human right, and that it should be recognised as such.

Augmented communication has the potential to have a tremendous beneficial impact on the health and well-being of those whose condition places barriers between themselves and others, which until recently were insurmountable, and indeed, on their families and friends. Technological and therapeutic advances have in recent years revolutionised the support that can be given to those who have lost, or never had, the tools of speech and language that allow us all to interact and that are critical to development, to education, to work and to living one’s life. Augmentative and assistive communication—AAC—aids range from tools for paper-based communication to pretty sophisticated electronic equipment.

Support in the past has not always been of sufficient consistency and quality, and the Bercow review in 2007 and the subsequent work of the Communication Champion, Jean Gross, have helped to identify systemic improvements, culminating in a new approach to the commissioning of AAC that began just a few months ago. It is worth pointing out that the new system is in its very early days. I was pleased that my hon. Friend acknowledged that it had the potential to work effectively. It is perhaps understandable that we have not got it quite as we would want it to be, given the early stage that we are at, but I agree that it has enormous potential. There is significant clinical consensus behind the new approach, and I am proud to say that it has been developed from the new structures of commissioning that this Government have introduced into the NHS.

In April this year, NHS England took on responsibility for the direct commissioning of specialised assessment and the provision of augmentative and assistive communication aids for adults, children and young people. NHS England’s role as an independent national commissioner is particularly suited to the effective commissioning of extremely complex, yet relatively low volume, services of this kind. Let us bear in mind that the patients who require AAC aids have extremely complex needs and in many cases require bespoke equipment that has been designed for them. My hon. Friend the Member for Totnes (Dr Wollaston) mentioned the training involved in the use of such equipment. It could not feasibly be provided by small-scale local services. Assessment and provision is needed by specialised tertiary providers with their concentration of expertise.

Previously, we had no national commissioning of AAC services and improvement across the board was essential. There was no standard or nationally consistent definition of those services, which were the commissioning and funding responsibility of the NHS. The effect of that was variation in the organisations commissioning and funding specialised AAC services and, crucially, inequitable access to them. There was a mix of non-NHS commissioning agencies, including social care and the education sector, to which my hon. Friend referred, and charity and third sector funding agencies that were commissioning the assessment and provision of specialised AAC aids. It was haphazard, depending very much on where people lived. That was unfair to those in need, and far from ideal for commissioners or providers.

That has now changed. NHS England—committed to ensuring national consistent commissioning of high quality, equitable and effective specialised services—has worked with the expert partners on its clinical reference group for complex disability to develop for the first time a nationally consistent specification for specialised AAC aids, which was subject to public consultation. The specification has allowed a clear demarcation of the responsibilities of clinical commissioning groups in relation to less specialised AACs—around 90% of the total provision. The highly specialised services will be commissioned by NHS England. It will be an important role for NHS England to work to support CCGs in their commissioning of the less specialised end of the spectrum and to ensure that we build capacity rather than lose it, as my hon. Friend feared could happen. If we get this right, the potential of having this specialist team working nationally with local commissioners could be significant.

In implementing the specification, NHS England will draw on the recommendations of the Bercow review and the Government communication champion to consider, in particular, how best to ensure more consistent and responsive commissioning of AAC aids across England and the implications of meeting unmet need. We know from recent research from Communication Matters that there is variation in service provision across England—the postcode lottery to which I referred—and inconsistency in identifying, assessing and providing AAC services.

A key priority is therefore to ensure that commissioning arrangements for this specialised service are placed on a much more robust and equitable footing across England. NHS England is working with its clinical reference groups and area teams to identify areas where there may be inequalities and where additional resources may be required to bring about better access. The clinical expertise both embedded in the organisation and accessed through its close association and close partnership working with organisations such as ACE—Aiding Communication in Education—will be decisive in this. I met Anna Reeves of ACE yesterday, and I would like to pay tribute to the amazing work she has done in leading the case for much better access to these services. She has worked tirelessly in that regard and should be credited for doing so.

I would also like to acknowledge the potential benefits of clinically-led commissioning of services for children with special educational needs as part of new joint arrangements, which will also provide far more tailored support, focused on the health and lifestyle outcomes for the child, for the developmental needs of children who require AAC aids. The Children and Families Bill sets out a framework for a new integrated approach to meeting the needs of children and young people with special educational needs. This will include many children, potentially the majority, of children in need of AAC aids.

In brief, the Bill’s provisions will get clinical commissioning groups and local authorities—and, in some cases, the NHS Commissioning Board, where it is acting as a commissioner of services for a child or young person—to enter into joint arrangements to assess, plan and commission the services needed by children and young people with special educational needs. Each child’s improvement outcomes, and the services they need to deliver them, will be captured in the education, health and care plan, to which the relevant commissioners will contribute. That is a much more joined-up approach than we have ever had in the past.

The new arrangements will be introduced in 2014, Parliament allowing. Twenty pathfinder local authorities are piloting new approaches to integrated assessments and the plans currently. The amended Bill now includes a duty on CCGs to secure the services that they agree the individual needs and which comprise the education, health and care plan. We have specifically required in the mandate for the NHS—the Government’s priorities—the need for improvement, through partnership working, to support children and young people with special educational needs and disabilities, and for ensuring that children have access to the services identified in the agreed care plan. AAC support will be a significant part of these plans for many children.

NHS England and CCGs will need to work closely with local authorities and, of course, health and wellbeing boards, which will include the local authority director of children’s services and the local healthwatch. That is the vehicle for a consensual local identification of needs and a local strategy for meeting them. The health and wellbeing board must, as our guidance makes clear, have particular regard for hard-to-reach groups and those with complex conditions, which will require more specialised health services, as well as ensuring it has an in-depth understanding of more widespread health needs among the population.

I congratulate the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on initiating this important debate. In the allocation of resources and the approval of plans, what mechanisms for appeal will there be for individuals who feel that they have not been fairly treated, or indeed for areas that feel that?

There will be the potential to challenge and question to ensure that the individual is satisfied that their case has been properly heard, but I will also write to the right hon. Gentleman to fill in the details further to ensure that he understands the position fully.

Let me make a quick point about the historical budgets to which my hon. Friend the Member for Blackpool North and Cleveleys referred. To start with, NHS England has worked on the basis of the amount spent hitherto. It is important to say that work is very much ongoing on this matter, and it is absolutely recognised that it is important to get it right and to assess the level of need so that we can identify how much needs to be spend on it. This is not a done deal and he should not assume that this is the end of the story. He also made a point about organisations with great expertise which could be excluded from being able to play a part in this. I can reassure him that they will be able to bid to do work. He also made the point about loss of equipment on leaving school, and it is really important that that is avoided; that sort of thing is utterly crazy and we must ensure continuity. As he rightly said, this is a health issue and it must be recognised as such. He talked about the hub-and-spoke issue. The relationship between the expert team nationally and the CCGs has the potential to work well to build capacity within the system to improve the level of expertise available and to ensure a more consistent approach.

I hope that what I have said today provides significant reassurance to hon. Members about the robustness of the new approach to deliver AAC aids, not least in the role of NHS England in leading the development of expert service specifications and implementing them in a national programme of commissioning to deliver improved and responsive communication support. We are not complacent and, together with NHS England, we understand that more needs to be done to ensure absolute consistency across England, so that everyone who needs it has access to high-quality, equitable and effective AAC support. We have in place the right system to deliver that; my profound belief is that we will shortly be able to recognise NHS England, in this regard, as an exemplar of the effective design and commissioning of specialised services.

Question put and agreed to.

House adjourned.