Augmentative and Alternative Communication Services

Paul Maynard Excerpts

Thursday 6th June 2013 Commons Chamber

[Paul Maynard (Blackpool North and Cleveleys) (Con)]

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.

[Mr Gordon Marsden (Blackpool South) (Lab)]

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?

[Paul Maynard]

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.

[Dr Sarah Wollaston (Totnes) (Con)]

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?

[Paul Maynard]

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.

[Cathy Jamieson (Kilmarnock and Loudoun) (Lab/Co-op)]

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?