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18 Apr 2012 : Column 468

Jonathan Edwards: I was going to make a far longer speech on the probing amendments that I have tabled, but I shall be brief. In Wales, we are normally calling for equality with Scotland, but tonight we are calling for equality with Northern Ireland. Phase 1 of the Silk commission is looking into fiscal powers. A precedent is clearly being set, in that this Finance Bill is being used to devolve job-creating levers to one devolved Government of the British state. If there is cross-party consensus on phase 1 of the Silk commission, we would expect those recommendations to be implemented in the next Finance Bill. We do not want to be told that we shall have to wait years and years for another Government of Wales Bill.

Phil Wilson: This is an important issue for airports outside the south-east of England. We should pursue a course of action that reflects its importance to regional airports and other airports in Scotland and Wales. I have been sent a letter asking for regional and national variation in air passenger duty outside the south-east. It is signed by people who run airports not only in Scotland but in England. This is a UK-wide issue.

Bob Stewart (Beckenham) (Con): Will the hon. Gentleman give way?

Phil Wilson: I will not give way, as I do not have much time.

Will the Minister look into whether there is a way of varying air passenger duty? I understand that there might be some European issues to deal with, but we must consider the congestion around Heathrow and Gatwick. Perhaps there could be two variations in the duty, and a small congestion charge to encourage the growth of regional airports around the country.

Miss Chloe Smith: I thank hon. Members for the breadth, and the brevity, of their comments in the debate, and I shall endeavour to cover all the relevant points in the few minutes available to me. Of course the Government firmly believe—as I think all hon. Members do—that aviation plays a vital role in the UK economy, by which I mean all the UK economy. I have taken on board the regional aspects of tonight’s debate. As hon. Members know, recent economic conditions have been difficult for airlines, but the UK remains internationally competitive and there are positive signs for the air industry, as shown by the growth in passenger numbers at major British airports—including Heathrow, but not limited to the south-east of England.

9 pm

I should note that measures in the Budget such as the corporation tax cut help to set a positive background for business. Members will want to note that, in contrast to the tax systems of other countries, the UK does not apply VAT on domestic flights. This Government are therefore firmly committed to maintaining the UK’s status as a global aviation hub, but this must be balanced against the Government’s general revenue requirements and the need for a fair contribution from the sector towards reducing the deficit.

I shall focus the majority of comments on the calls for devolution to Scotland and Wales, as reflected in the preceding debate. The issue of devolution was raised in the consultation on air passenger duty last year as well as by hon. Members today. Indeed, in the recent Committee debate on the Scotland Bill in the other place, the issue

18 Apr 2012 : Column 469

of devolved taxes was considered in some detail. One of the questions raised there, as it has been here tonight, was why the Government had acted on APD for Northern Ireland, but not for Scotland or Wales.

Hon. Members, including my near neighbour, my hon. Friend the Member for Great Yarmouth (Brandon Lewis), have touched on the fact that Northern Ireland faces a unique challenge, given that it is the only part of the UK to share a land border with another EU member state—one where aviation duty has recently been cut to a substantially lower rate. That is the context in which we have taken the decision to devolve direct long-haul rates to the Northern Ireland Assembly. I thank the hon. Member for Sedgefield (Phil Wilson) for his sensible acknowledgement that this was for economic development reasons. Any decision to devolve APD further, such as to Scotland or Wales, must of course be based on a full examination of the evidence.

Bob Stewart: Will the Minister give way?

Miss Smith: Extremely briefly.

Bob Stewart: I thank the Minister. I have just one thing to add to the argument—that there are small airports in the south-east of England, too, and they also require support. These are not the big airports that everyone talks about.

Miss Smith: My hon. Friend makes a fine point, and I acknowledge it in what I am saying about the regional aspects of the debate and the necessity of aviation in many different parts of the United Kingdom.

Cathy Jamieson: Briefly, I heard what the Minister said about looking again at the whole issue of devolution. Does she accept that there is also a need to look at aviation taxation generally in the round? Does she have any plans to do that, as well as looking further at the question of devolution?

Miss Smith: In brief, all taxation is, of course, kept under review. If the hon. Lady will allow me, I will proceed and I shall endeavour to answer her other points in doing so. My main point about the potential devolution of APD is focused on the wider-ranging impact such a move might have across the whole of the UK economy. We should not run the risk of replicating the same problems that Northern Ireland has faced with its land border and lower taxes in the Republic.

Let me reiterate here today the Government’s determination to examine the full range of effects that the devolution of APD could have on Scotland, Wales and the UK as a whole before any final decision is taken. As I think the hon. Member for Kilmarnock and Loudoun (Cathy Jamieson) knows, this sits in context with a number of other pieces of work that the Government are doing on aviation.

Let me briefly deal with the issue of rates, which the lead amendment is designed to alter. Hon. Members will know that the Government were able to freeze APD for a year in March 2011. At the high cost to the Exchequer of £140 million, I think people will appreciate that this was not easy. Looking to the future, if we are to stay on course with our deficit reduction plans, it is necessary for APD rates to rise. The fact of the matter is that, over the two years 2011-12 and 2012-13, the increase in APD rates equates to a rise of no more than inflation.

18 Apr 2012 : Column 470

Indeed, most passengers will pay only £1 more on their flights. That increase is necessary. To provide greater certainty, we have also set out in this Budget the APD rates for two years up to 2013-14.

Let me move on briefly to other issues in the amendments. As I said earlier, passengers on business jet flights currently do not pay APD, whereas ordinary passengers aboard commercial flights do. We have recognised that anomaly, and are introducing fair changes to include business jet flights for the first time.

I have touched briefly on the changes that we are making in relation to Northern Ireland. I think that they have been welcomed by Northern Ireland Members here tonight, and by others outside the House.

The Government have listened, and have taken on board many of the concerns that were expressed during the recent consultation. I believe that we are striking the right balance—

9.5 pm

Eight and a quarter hours having elapsed since the commencement of proceedings, the debate was interrupted (Programme Order, 16 April).

The Chair put forthwith the Question already proposed from the Chair (Standing Order No. 83D), That the clause stand part of the Bill.

Question put and agreed to.

Clause 189 ordered to stand part of the Bill.

The Chair then put forthwith the Questions necessary for the disposal of the business to be concluded at that time (Standing Order No. 83D.)

Schedule 23

Air Passenger Duty

Amendment proposed: 61, page 536, line 17, at end insert—

‘(1) The Scotland Act, Schedule 5, section A1 (exceptions) is amended as follows:

(2) After ‘rates)’, insert—

“(1) Air Passenger Duty on all flights that are—

(a) originating from an airport or aerodrome in Scotland and,

(b) not part of a connecting flight from—

(i) a domestic UK airport or aerodrome, or

(ii) a territory specified in Part 1 of Schedule 5A of the Finance Act 1994.”’.—(Mr MacNeil.)

The Committee divided:

Ayes 9, Noes 312.

Division No. 524]

[9.5 pm

AYES

Llwyd, rh Mr Elfyn

Lucas, Caroline

MacNeil, Mr Angus Brendan

Robertson, Angus

Skinner, Mr Dennis

Weir, Mr Mike

Whiteford, Dr Eilidh

Winnick, Mr David

Wishart, Pete

Tellers for the Ayes:

Jonathan Edwards and

Stewart Hosie

NOES

Adams, Nigel

Afriyie, Adam

Aldous, Peter

Alexander, rh Danny

Amess, Mr David

Andrew, Stuart

Arbuthnot, rh Mr James

Bacon, Mr Richard

Baker, Norman

Baker, Steve

Baldry, Tony

Baldwin, Harriett

Barclay, Stephen

Baron, Mr John

Barwell, Gavin

Bebb, Guto

Beith, rh Sir Alan

Benyon, Richard

Beresford, Sir Paul

Berry, Jake

Bingham, Andrew

Binley, Mr Brian

Birtwistle, Gordon

Blackman, Bob

Blackwood, Nicola

Blunt, Mr Crispin

Boles, Nick

Bottomley, Sir Peter

Bradley, Karen

Brake, rh Tom

Bray, Angie

Bridgen, Andrew

Brine, Steve

Brokenshire, James

Browne, Mr Jeremy

Bruce, Fiona

Bruce, rh Malcolm

Buckland, Mr Robert

Burley, Mr Aidan

Burns, Conor

Burns, rh Mr Simon

Burrowes, Mr David

Burstow, Paul

Burt, Alistair

Burt, Lorely

Byles, Dan

Cairns, Alun

Carmichael, rh Mr Alistair

Carmichael, Neil

Cash, Mr William

Chishti, Rehman

Chope, Mr Christopher

Clappison, Mr James

Clark, rh Greg

Clegg, rh Mr Nick

Clifton-Brown, Geoffrey

Coffey, Dr Thérèse

Collins, Damian

Colvile, Oliver

Crabb, Stephen

Crockart, Mike

Crouch, Tracey

Davey, rh Mr Edward

Davies, David T. C.

(Monmouth)

Davies, Glyn

Davies, Philip

Davis, rh Mr David

de Bois, Nick

Dinenage, Caroline

Djanogly, Mr Jonathan

Dodds, rh Mr Nigel

Donaldson, rh Mr Jeffrey M.

Dorrell, rh Mr Stephen

Dorries, Nadine

Doyle-Price, Jackie

Drax, Richard

Duddridge, James

Duncan, rh Mr Alan

Duncan Smith, rh Mr Iain

Dunne, Mr Philip

Ellis, Michael

Ellison, Jane

Ellwood, Mr Tobias

Elphicke, Charlie

Eustice, George

Evans, Graham

Evans, Jonathan

Evennett, Mr David

Fabricant, Michael

Fallon, Michael

Foster, rh Mr Don

Fox, rh Dr Liam

Francois, rh Mr Mark

Freeman, George

Freer, Mike

Fullbrook, Lorraine

Garnier, Mark

Gauke, Mr David

George, Andrew

Gibb, Mr Nick

Gilbert, Stephen

Gillan, rh Mrs Cheryl

Glen, John

Goodwill, Mr Robert

Graham, Richard

Grant, Mrs Helen

Gray, Mr James

Grayling, rh Chris

Green, Damian

Greening, rh Justine

Griffiths, Andrew

Gummer, Ben

Gyimah, Mr Sam

Halfon, Robert

Hames, Duncan

Hammond, Stephen

Hancock, Matthew

Hancock, Mr Mike

Hands, Greg

Harper, Mr Mark

Harrington, Richard

Harris, Rebecca

Hart, Simon

Harvey, Nick

Hayes, Mr John

Heald, Oliver

Heath, Mr David

Heaton-Harris, Chris

Hemming, John

Henderson, Gordon

Hendry, Charles

Herbert, rh Nick

Hinds, Damian

Hoban, Mr Mark

Hollingbery, George

Hollobone, Mr Philip

Hopkins, Kris

Howell, John

Huhne, rh Chris

Hunt, rh Mr Jeremy

Hurd, Mr Nick

Jackson, Mr Stewart

James, Margot

Javid, Sajid

Johnson, Gareth

Johnson, Joseph

Jones, Andrew

Jones, Mr David

Jones, Mr Marcus

Kawczynski, Daniel

Kelly, Chris

Kirby, Simon

Knight, rh Mr Greg

Kwarteng, Kwasi

Laing, Mrs Eleanor

Lancaster, Mark

Lansley, rh Mr Andrew

Laws, rh Mr David

Leadsom, Andrea

Lee, Jessica

Lee, Dr Phillip

Lefroy, Jeremy

Leigh, Mr Edward

Leslie, Charlotte

Lewis, Brandon

Liddell-Grainger, Mr Ian

Lidington, rh Mr David

Lilley, rh Mr Peter

Lloyd, Stephen

Long, Naomi

Lopresti, Jack

Lord, Jonathan

Loughton, Tim

Luff, Peter

Lumley, Karen

Macleod, Mary

Main, Mrs Anne

May, rh Mrs Theresa

Maynard, Paul

McCartney, Jason

McCartney, Karl

McIntosh, Miss Anne

McPartland, Stephen

McVey, Esther

Mensch, Louise

Menzies, Mark

Mercer, Patrick

Metcalfe, Stephen

Miller, Maria

Mills, Nigel

Milton, Anne

Mitchell, rh Mr Andrew

Moore, rh Michael

Mordaunt, Penny

Morgan, Nicky

Morris, Anne Marie

Morris, David

Morris, James

Mosley, Stephen

Mowat, David

Mundell, rh David

Munt, Tessa

Murray, Sheryll

Murrison, Dr Andrew

Neill, Robert

Newmark, Mr Brooks

Newton, Sarah

Nokes, Caroline

Norman, Jesse

Nuttall, Mr David

O'Brien, Mr Stephen

Offord, Mr Matthew

Ollerenshaw, Eric

Opperman, Guy

Osborne, rh Mr George

Paice, rh Mr James

Parish, Neil

Patel, Priti

Paterson, rh Mr Owen

Pawsey, Mark

Penning, Mike

Penrose, John

Percy, Andrew

Perry, Claire

Phillips, Stephen

Pickles, rh Mr Eric

Pincher, Christopher

Poulter, Dr Daniel

Prisk, Mr Mark

Pugh, John

Raab, Mr Dominic

Randall, rh Mr John

Reckless, Mark

Redwood, rh Mr John

Rees-Mogg, Jacob

Reid, Mr Alan

Rifkind, rh Sir Malcolm

Robathan, rh Mr Andrew

Robertson, Mr Laurence

Rogerson, Dan

Rosindell, Andrew

Rudd, Amber

Ruffley, Mr David

Russell, Sir Bob

Rutley, David

Sanders, Mr Adrian

Sandys, Laura

Scott, Mr Lee

Selous, Andrew

Shannon, Jim

Shapps, rh Grant

Sharma, Alok

Shelbrooke, Alec

Simmonds, Mark

Skidmore, Chris

Smith, Miss Chloe

Smith, Henry

Smith, Julian

Soubry, Anna

Spencer, Mr Mark

Stephenson, Andrew

Stevenson, John

Stewart, Bob

Stewart, Iain

Stewart, Rory

Streeter, Mr Gary

Stride, Mel

Stuart, Mr Graham

Stunell, Andrew

Sturdy, Julian

Swales, Ian

Swayne, rh Mr Desmond

Swinson, Jo

Swire, rh Mr Hugo

Syms, Mr Robert

Tapsell, rh Sir Peter

Thurso, John

Timpson, Mr Edward

Tomlinson, Justin

Tredinnick, David

Truss, Elizabeth

Turner, Mr Andrew

Tyrie, Mr Andrew

Uppal, Paul

Vara, Mr Shailesh

Vickers, Martin

Villiers, rh Mrs Theresa

Walker, Mr Charles

Walker, Mr Robin

Wallace, Mr Ben

Walter, Mr Robert

Ward, Mr David

Watkinson, Angela

Webb, Steve

Wharton, James

White, Chris

Whittaker, Craig

Whittingdale, Mr John

Wiggin, Bill

Willetts, rh Mr David

Williams, Mr Mark

Williams, Roger

Williams, Stephen

Williamson, Gavin

Willott, Jenny

Wilson, Mr Rob

Wilson, Sammy

Wollaston, Dr Sarah

Wright, Simon

Yeo, Mr Tim

Young, rh Sir George

Zahawi, Nadhim

Tellers for the Noes:

Mark Hunter and

Jeremy Wright

Question accordingly negatived.

18 Apr 2012 : Column 471

18 Apr 2012 : Column 472

18 Apr 2012 : Column 473

Schedule 23 agreed to.

The occupant of the Chair left the Chair (Programme Order, 16 April).

The Deputy Speaker resumed the Chair.

Progress reported; Committee to sit again tomorrow.

Business without Debate

Delegated legislation

Motion made , and Question put forthwith (Standing Order No. 118(6)),

Statistics Board

That the draft Statistics and Registration Service Act 2007 (Disclosure of Social Security and Revenue Information) Regulations 2012, which were laid before this House on 27 February, be approved.—(Mr Newmark.)

Question agreed to.

Motion made , and Question put forthwith (Standing Order No. 118(6)),

Education

That the draft Apprenticeships (Alternative English Completion Conditions) Regulations 2012, which were laid before this House on 27 February, be approved.—(Mr Newmark.)

Question agreed to.

European Union Documents

Motion made , and Question put f orthwith (Standing Order No. 119 ( 11 )),

Commission Work Programme

That this House takes note of European Union Document No. 17394/11 and Addendum, relating to the Commission Work Programme 2012-Delivering European Renewal, which sets out the Commission’s priorities and previews the legislative proposals, initiatives and communications that the Commission is planning to put forward in 2012; supports the Government’s view that the most significant initiatives are those that help to deliver growth in the EU, including measures towards completing the Single Market, improving stability in the financial sector and the flexibility and competitiveness of the EU, and reducing the overall EU regulatory burden on business; shares the Government’s concerns about the potential impacts of a small number of specific proposals on the EU’s ability to achieve growth; and further supports the Government’s view that any proposals should be evidence-based and avoid increasing burdens on business, especially small enterprises and micro businesses.—(Mr Newmark.)

Question agreed to.

18 Apr 2012 : Column 474

Selective Dorsal Rhizotomy

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

9.20 pm

Chris Heaton-Harris (Daventry) (Con): A couple of years ago, like every other candidate in the general election I was eagerly watching my local press—for me, mainly the Daventry Express—to see what stories were making local headlines. In the run-up to the election, the Daventry Express and its sister paper the Northampton Chronicle and Echo both rather brilliantly covered the story of Holly Davies, a young girl from Daventry who was suffering from cerebral palsy and whose family were raising £40,000 so that she could go to America for a life-changing operation that would enable her to walk freely for the first time in her life. A few months later Holly, who could barely walk before the operation, returned from the St Louis children’s hospital a completely different girl. The procedure she had is called selective dorsal rhizotomy, or SDR, and Holly was operated on by the world’s leading expert surgeon in this field—Dr Tae Sung Park.

Dr Park is without doubt one of the world’s leading paediatric neurosurgeons, has received a host of honours for his surgical innovations and clinical research, and has literally been the pioneer in this field. St Louis school of medicine in Washington university, where Dr Park is the Shi Hui Huang Professor of Neurological Surgery, is ranked third in the US, while the St Louis children’s hospital is ranked fifth in the US for overall performance in medicine. Those world-leading institutions would not allow the SDR operation to be practised if it did not work or if it had significant complications. They know that it works. Indeed, SDR is so successful that every single medical insurance policy that can be bought in the States covers the procedure because it is realised that spending money up-front on these individuals saves a great deal more expense in the future—a point I wish to heavily underline in this debate.

Dr Park has operated on people from 48 different countries and a number of those countries have trained or are training surgeons to offer this procedure. Indeed, SDR is currently performed in Germany, Sweden, the Netherlands, Italy, Poland, Korea, Japan, Hong Kong, Canada and Mexico. As of 30 March 2012, 145 people from the United Kingdom have been operated on in St Louis—120 from England, 18 from Scotland and 7 from Wales.

So what is this miracle operation, selective dorsal rhizotomy? Of all the surgical procedures currently performed on patients with cerebral palsy, SDR has probably undergone more thorough scientific scrutiny than any other, including the various types of orthopaedic surgery. Accumulated evidence and my constituent’s experience indicate that SDR is an excellent option for selected patients with spastic cerebral palsy.

SDR involves the sectioning, or cutting, of some of the sensory nerve fibres that come from the leg muscles. There are two groups of nerve roots that leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscles and the dorsal spinal roots transmit sensation back from the muscles to the spinal cord. In the operation, the neurosurgeon divides each of the dorsal roots into between three and five

18 Apr 2012 : Column 475

rootlets and stimulates each electronically. By examining the electromyographic responses from muscles in the lower extremities, the surgical team can identify the rootlets that have caused the spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact, which reduces the number of mixed messages from the muscles, resulting in a better balance of activity in the nerve cells in the spinal cord and thus reducing spasticity.

Let me tell the House what that means in human terms. Last year, I was fortunate enough to meet for the first time Holly’s mum, Jo Davies, who wanted to talk to me about Holly’s new post-operation life. I shall read a few lines from “Holly’s Diary” a few years after her operation:

“September 2011—and Holly is starting school. She has her school shoes, bought from Clarks, not from Northampton General Hospital—and she loves them! It is such a small thing, but something I really never thought she would be able to do. I used to worry about school shoes—I know this sounds silly but the NHS would only give you one pair of boots at a time and this was either going to mean her having pink boots for school or black boots for home. Not very fair on a little girl—but now we don’t have to worry. She is wearing normal school shoes, has flashing trainers for the weekend and now even has a pair of ‘Ugg’ boots!

We recently posted a video of Holly on her Facebook page as people were asking how she was doing. It isn’t until you watch the before and then after videos that you see the amazing progress she is making. Dr Park even commented on her video and was really pleased with what he saw and has assured us that more improvements will be seen in the next 3 months.”

Tom Brake (Carshalton and Wallington) (LD): May I draw to my hon. Friend’s attention the success of the operation for my constituent Dana Johnston, and encourage him to commend the work that she and her family have done with Support4SDR to campaign on the issue?

Chris Heaton-Harris: I happily commend their work. I have met Dana and her mother—a very powerful lady who has fought hard for her daughter’s rights and saved a lot of money so that she could have the procedure.

To return to the diary:

“Just these last couple of days she has started to learn to run. Prior to SDR her running technique was no faster than my normal walking pace and she had a swing to her hips that made it look like she would trip at any moment. I now need to walk very fast and sometimes even jog to keep up with her run and she has less swinging of the hips. She is still a long way off the speed and ability of her friends when it comes to running but she is definitely getting better at it.”

The next point is very important:

“Holly has also grown in confidence. She speaks out at school, joins in with activities more and is a nightmare at the park. She climbs up climbing frames that even her 7 year old sister would be wary over. It really is hard to believe that without the operation she would not be able to do these things.”

Jim Shannon (Strangford) (DUP): I am very pleased about the successful outcomes for the hon. Gentleman’s constituent and for the constituent of the right hon. Member for Carshalton and Wallington (Tom Brake). Billy Douglas is three years old and lives in the village of Ballygowan in my constituency. Unfortunately, he has not yet had the operation but is trying to get it. Does the hon. Gentleman agree that it is not just a question of the operation, but the physiotherapy as

18 Apr 2012 : Column 476

well? It is a nine-month process and it is very important. Does he think that the NHS ought to make provision not only for the operation but for the physiotherapy? Families are asked to provide £50,000 for the operation and the physiotherapy, but that is beyond the budget of many people. Even with fundraising events it is almost impossible to reach that amount unless the Government or the NHS are prepared to help. Does he agree that we need compassion and financial help for many families across the whole United Kingdom?

Chris Heaton-Harris: I absolutely concur. Indeed the final paragraph I wanted to read from “Holly’s Diary” states:

“Finally—we are continuing with Holly’s strict physio programme. She has 1 hour a week from the NHS and we pay privately for a further 2 hours a week from different therapists.”

As we have just heard, for the best results from SDR the operation must be followed by intensive physiotherapy. As an aside, one thing that all the parents who have raised the money for their child’s operation have in common is the basic lack of interest in the patient from the NHS when they return home from abroad, especially when they try to get regular physiotherapy to ensure that their children benefit from the operation to the maximum extent possible. Essentially, the more physio a patient receives in the first years after the operation, the greater the level of ongoing success and the level of manoeuvrability in the patient. Can the Minister help to remedy the situation?

Jesse Norman (Hereford and South Herefordshire) (Con): I congratulate my hon. Friend on securing this debate. Is he familiar with the case of young Ellis Jones in my constituency, who has just returned to the UK after his family raised an extraordinary £45,000 to fund what appears to be highly successful SDR surgery with Dr Park in St Louis? I pay tribute to Ellis and his family, to the generosity of the communities around them, and to the Hereford Times, which led the way in gathering local publicity and support. Ellis is just two years old. Does my hon. Friend think there may be a case for extending the current treatment under NICE guidelines to include suitable children as young as two years old?

Chris Heaton-Harris: I thank my hon. Friend for that intervention. I will come to that, but I entirely concur. The earlier the problem can be tackled, the better, in general terms.

As I mentioned previously, the global medical community gradually became aware of Dr Park’s superb work in St Louis. Here in the UK, on 3 May last year, the very first UK micro-neurosurgical SDR was performed in Frenchay hospital in Bristol. Kristian Aquilina, the consultant neurosurgeon, and his team carried out this operation. Towards the end of last year, I took Mr Aquilina and some parents whose children have benefited from SDR, including my constituent Jo Davies into the Department of Health for a very helpful meeting with a couple of the Minister’s officials, in a bid to encourage the NHS to offer SDR here in the UK. The hope is that there would be three or four centres of excellence that could offer the operation to those patients who had been evaluated as able to benefit massively from the procedure.

18 Apr 2012 : Column 477

From speaking to Mr Aquilina, I know that he has now set up a multidisciplinary team at Frenchay hospital to evaluate and select children for SDR. This team consists of a number of people—a paediatric physiotherapist with special expertise in cerebral palsy, a paediatric neurosurgeon, a paediatric orthopaedic surgeon and a paediatric neurologist. Mr Aquilina tells me:

“Children over four years of age, with a diagnosis of spastic diplegia following premature birth, should be considered for SDR. Children with typical spastic diplegia, whether born prematurely or at term, should also be considered. These children tend to have delayed motor development and spasticity interferes with their progress.”

I am also aware that another surgeon, Mr John Godden, from Leeds has been out to St Louis to learn about the procedure and is ready to undertake his first operation.

One of the common causes of cerebral palsy is premature birth and there is now extensive evidence, recognised by NICE, that demonstrates the value of SDR for these children. The NICE guidelines for SDR were issued in December 2010 and concluded:

“The evidence on efficacy is adequate. Therefore this procedure may be used provided that normal arrangements are in place for clinical governance and audit.”

But a more recent guideline focused on the lack of long-term studies of outcome and changed the first NICE guidelines, recommending that SDR be done in the context of clinical research. The problem with that is that a long-term study for, say, 10 or 20 years after surgery, costs an awful lot of money, and because no long-term study has been done on any of the non-surgical and surgical treatments currently employed here in the UK, following that rationale to its logical conclusion would mean that this successful proven treatment for cerebral palsy cannot be covered by the NHS for years.

Jackie Doyle-Price (Thurrock) (Con): I commend my hon. Friend for the eloquent way he is making the case for the procedure. I have two cases in my constituency where the local community has come together to raise £40,000 each time to fund the treatment. On the point that my hon. Friend is making about the need for long-term trials, surely all NICE needs to do is to look at those children and how their lives have been transformed by that procedure.

Chris Heaton-Harris: I absolutely agree. In the United States, SDR has been practised since late 1986. Dr Park has been performing the operation since May 1987. SDR is currently performed in many medical centres across the US and has undergone unprecedented scientific and clinical scrutiny by orthopaedic surgeons, neurologists, rehabilitation medicine practitioners, therapists—the lot. At this time, medical evidence shows that SDR is more robust than any other treatment for cerebral palsy. It is the only treatment that can reduce spasticity permanently and that enables patients to move better and thus allows them to exercise as they grow, which anyone with spasticity cannot do. SDR at an early age reduces the rate of orthopaedic surgery and there are many other proven benefits.

SDR is safe. Of Dr Park’s 2,300-plus patients, only two have developed spine problems and three have had spinal fluid leaks that needed surgical repair. None has developed neurological complications such as paralysis or loss of bladder control. Some of Dr Park’s patients

18 Apr 2012 : Column 478

who had SDR 20 or 25 years ago are now in their mid-40s and not one patient has returned to him with late complications.

The purpose of the debate is to ask the Minister, his Department, NICE and the commissioners of procedures in the future to look at the success of SDR elsewhere in the world and help those practising it in the UK to overcome any of the remaining hurdles so that it can be performed on the NHS without problems or charge.

Children suffering from cerebral palsy in the UK are invariably given a frame for the first four or five years of their life and are then given a wheelchair when it becomes too difficult for them to walk with the frame. SDR can enable many of those wheelchair-bound children to walk independently, sometimes for the first time. An excellent example of this is a constituent of my right hon. Friend the Member for Carshalton and Wallington (Tom Brake), Dana Johnston, whom I had the pleasure of meeting very recently and who used a wheelchair 90% of the time before she had the SDR operation. Now, eight months after that operation, Dana does not use her wheelchair at all and is looking forward to a future of walking everywhere and living as close to a normal life as possible.

SDR would not be a very common operation, but it would change those who undergo the procedure from being recipients of taxpayers’ money via the NHS over a protracted period—in fact, for their lifetimes—to being active, tax-paying members of society in the future.

In Chichester, a friend of a friend is trying to raise £24,000 so that his grandchild, Finlay Fair, can be operated on by Mr Aquilina in Bristol. Indeed, Finlay’s financial target has nearly been reached and if all is well he will be operated on later this month. As I mentioned earlier, in the past three years or so 145 parents have raised the £40,000 and more required to get their children SDR in St Louis. I completely understand that the NHS, the Department of Health, NICE and any future commissioning body will all have procedures and processes that need to be followed, but surely it is now time for us to say that this life-changing, well-researched operation should be funded across the country by the NHS. We have surgeons with the expertise, an operation with a long-track record of success and children who could be walking and running independently, rather than being consigned to a life in a wheelchair.

I ask the Minister for whatever support he can give to ensure that SDR is offered by our excellent national health service so that in the future the parents of remarkable children such as Holly Davies, Dana Johnston and Finlay Fair as well as those given as examples by my colleagues do not have the burden of having to raise large sums of money to pay for their children to have this amazing, life-changing operation.

9.38 pm

The Minister of State, Department of Health (Paul Burstow): I congratulate my hon. Friend the Member for Daventry (Chris Heaton-Harris) on securing the debate and bringing this very important matter to the attention of the House. The contributions of other hon. Members demonstrated just how strongly people feel about the issue. He outlined with great clarity the huge impact on the lives of children and of their families. Such debates are often prompted by casework but,

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interestingly and quite rightly, they can be prompted by the diligent work of local journalists reporting in the local press, which is testament to the importance of our local papers.

As my hon. Friend is aware, cerebral palsy is a brain condition that affects movement, posture and co-ordination. It might be seen at or around the time of birth or might not become obvious until early childhood. Some children will have lower limb spasticity, which can cause problems with walking and sitting, as well as discomfort, cramps and spasms. Sadly, there is no cure for cerebral palsy and as no two children are exactly the same, which means that they will not be affected by cerebral palsy in exactly the same way, treatment programmes vary widely.

Occupational therapy, speech therapy, medication and surgery all have a role to play in reducing the impact of the condition, but, because all children with cerebral palsy have movement problems, physiotherapy, to which the hon. Member for Strangford (Jim Shannon) referred, is undoubtedly the bedrock of the condition’s good management.

NHS physiotherapy services, including post-surgery physiotherapy for children with cerebral palsy, are provided on the basis of assessed clinical need, but initiatives such as the self-referral-to-physiotherapy pilots, the allied health professional referral-to-treatment revised guide and the AHP service improvement project are all supporting improvements to access and outcomes, and I will certainly look further at the point that my hon. Friend made about ensuring the provision of such access, when treatment has been delivered outside the NHS, so that people receive the appropriate aftercare.

My hon. Friend also made powerful references to several cases and, in particular, to the one from his constituency, that of Holly Davies, whose life, from my hon. Friend’s own testimony today and from her diary entries, has clearly been transformed by undergoing selective dorsal rhizotomy, SDR, under the care of Dr Tae Sung Park—whom my hon. Friend rightly described as one of the world’s leading paediatric neurosurgeons—at St Louis children’s hospital in Missouri.

Dr Park and his colleagues have pioneered the use of this procedure, which has benefited many thousands of children from throughout the world. We also heard today how Holly’s family have worked tirelessly to raise both awareness of the procedure and the funds to send their daughter to the USA to receive the treatment, and I can well understand the frustration, expressed by hon. Members in this debate, at the sense that the NHS might in some way be denying people access to the procedure.

Of course, those of us who are parents—even those of us who are not—want the best for our children, and in many cases SDR has been shown to improve a child’s comfort and quality of life. Even the simplest day-to-day tasks, such as standing and walking, can be made easier due to the increased flexibility in their limbs, so SDR is a major surgical procedure that aims to reduce the amount of information, as my hon. Friend rightly described, that the sensory nerves carry. As he also said, after the procedure patients need long-term physiotherapy and aftercare, and it is important to ensure that such continuity of care is part of the service that they receive.

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The current technique, in which only those nerve rootlets that contribute most to the spasticity are divided, was introduced as far back as 1978, but it is important to stress that SDR is not a cure for cerebral palsy, nor is it suitable for the treatment of abnormal movements or of balance problems. Indeed, it is suitable only for appropriate children, as Members have acknowledged in this debate, after assessment by clinicians. It is therefore unlikely to be suitable for other types of cerebral palsy.

As my hon. Friend will be aware, the Department does not make central decisions or directions on the funding of treatments; it is for local commissioners to decide whether to approve funding for treatments, based on proper consideration of the clinical evidence and—it is important that I stress this—the patient’s individual circumstances.

Tom Brake: Given that the Minister and the hon. Member for Daventry (Chris Heaton-Harris), who opened the debate, have identified that a relatively small number of children would benefit from SDR, what role will specialist commissioning or, indeed, the NHS Commissioning Board play in looking at treatment throughout the whole country for those young people?

Paul Burstow: My right hon. Friend makes a rather important point. One of the opportunities that the Health and Social Care Act 2012, which we have taken through the House, provides is through the establishment of the NHS Commissioning Board. For the first time, all specialised commissioning will be done in one place and at one level, and, although no decisions have yet been made about the area under discussion, it is one of many, involving rare conditions or where specialist expertise needs to be brought to bear, in which the board can contribute to driving improvement.

Parliament has given the job of assessing the clinical evidence to the National Institute for Health and Clinical Excellence in order to provide clinicians with guidance on the safety and efficacy of procedures. NICE does so through its interventional procedures programme, which is different from the more recently published guidance, to which I shall turn in a moment. NICE’s interventional procedures guidance protects patient safety and supports people in the NHS in the process of introducing new procedures. Many of the procedures that NICE investigates are new, but it also looks at more established procedures of the sort that we are discussing and at issues of safety and how well procedures work. By providing guidance on how safe procedures are and how well they work, NICE makes it possible for new treatments and tests to be introduced into the NHS in a responsible way. NICE’s interventional procedures guidance has a slightly different, but equally important, purpose from that of its other guidance products. Interventional procedures guidance does not provide advice on whether treatments are clinically and cost effective, but it does provide advice on whether such procedures are safe and efficacious enough to use in clinical practice.

As my hon. Friend said, NICE published its updated interventional procedures guidance on SDR for spasticity in cerebral palsy in December 2010 in the light of the emerging evidence base from this country and around the world. NICE’s guidance states that the procedure may be used provided that normal arrangements for clinical governance and audit are in place. While the

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evidence suggested that the operation can improve the comfort and mobility of some people who have cerebral palsy, it was recognised that there are none the less serious risks that would have to be mitigated and managed as part of the procedure, not least in relation to harm to bladder function and walking ability. NICE was clear that if appropriately trained health care professionals wish to offer this treatment, they must fully explain to the families what is involved and that further surgery and intensive aftercare may be needed. NICE is also aware that the surgical techniques used within this procedure are still evolving, and that is why it has made recommendations about further ongoing research, although my hon. Friend made a very powerful case about the evidence base that has developed in the United States over many years of the treatment’s use in that country.

My hon. Friend will be interested to know that NICE is currently developing clinical guidelines on the management of spasticity in children and young people that will provide guidance to the NHS on whether SDR represents a clinically and cost-effective use of NHS resources. NICE consulted on the draft guidance last October. The draft guidelines explained that the available evidence for the procedure shows that it is most likely to be effective in children with particular symptoms, but that the evidence of sustained benefit was not currently available or weak. That is another area where it says that there is a need for research.

I assure my hon. Friend that I will ensure that this debate is provided to the decision makers within NICE so that they can see the additional material that he has brought to the House’s attention and the contributions of other hon. Members. That is very important. I hope that others who are championing this cause have taken the opportunity to respond to the consultation on the draft guidance. I understand that the final version of the published guidance will come out in June this year.

My hon. Friend referred to the work of Kristian Aquilina in Bristol and touched on the work of Support4SDR. I strongly commend the work that both are doing to raise awareness of SDR as a treatment. I know that in December they had a very productive meeting with officials from my Department, not least

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Dr Sheila Shribman, the national clinical director for children and young people. I gather that the meeting was useful and that a number of avenues were set out for further pursuit and exploration. Throughout the health and social care system, more information for patients and their families and clinicians can help to ensure that more informed decisions are made. The key challenge for Mr Aquilina and Support4SDR will be to increase the awareness of SDR as a possible treatment for some children with cerebral palsy. At the meeting, a number of possible avenues were suggested, not least engagement with the Royal College of Surgeons, working closely with the Council for Disabled Children, and updating the relevant section of the NHS Choices website. My officials stand ready to continue to engage and to work with those wishing to pursue this.

The issues spoken of tonight are very important because of the impact that cerebral palsy can have on children and their families and the hope of a better future that can be offered by appropriate treatment, which, for some children, might mean SDR. Raising public awareness about the procedure is undoubtedly part of what tonight’s debate has done. I commend my hon. Friend and others for contributing to that and for continuing to do so beyond the debate. I hope that the debate will be a contribution to NICE’s deliberations.

Clearly, promoting SDR as a safe procedure for appropriate children can be done only at a clinician-to-clinician level, so I urge my hon. Friend and others to continue to work with Support4SDR and Mr Aquilina carefully to document and spread the results of this surgery. The compelling stories of those mentioned in the debate, whether it be Holly, or Dana—the constituent of my right hon. Friend the Member for Carshalton and Wallington (Tom Brake)—or Finlay, or many others, all bear testament to how this can make a difference to people’s quality of life. I look forward to seeing the work that is produced by NICE and others in the coming months.

Question put and agreed to.

9.50 pm

House adjourned.