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NHS: Osteoporosis Services

My Lords, I am most grateful to my noble friend Lady Quin for having initiated this debate on a condition which does not receive the attention it deserves. While osteoporosis is mentioned in national policy, it tends to be side-lined and remains under-prioritised. I welcome the attention that is now being given to the needs of post-menopausal women, especially the one-in-four women who are not receptive to Alendronate—as my noble friend pointed out—the mandatory treatment recently approved by NICE. I should declare an interest as someone who broke a leg in a simple fall a few years ago and has been prescribed alendronic acid since then. I hope that, through the work of organisations such as the National Osteoporosis Society, we are beginning to see progress so that osteoporosis is no longer taken for granted as an accepted facet of ageing, but is seen as a serious condition which requires prevention and treatment. However, that attention seems to be focused solely on the older population. Today, I want to highlight the needs of a group at an even higher risk of osteoporosis than the post-menopausal, but who receive scant attention when it comes to prevention—those who are long-term physically disabled with conditions such as polio, rheumatoid arthritis and spinal cord injury. Again, I declare an interest. The fact is that osteoporosis is very common in the disabled community. Fractures can have a devastating effect on our lives, not only in social terms, but also in long-term unemployment. When I broke my leg, I became totally dependent for the three months while it healed, unable to leave the house and needing help with everything from getting into bed, going to the loo and having meals made. But it was hearing about the experience of Kamran Mallick, the director of my local disability organisation, which for me put this issue into very stark relief. He has given me permission to tell his story. Kamran is a 35 year-old wheelchair user who was paralysed by polio when he was two. When he was 16, he had metal rods inserted by the Royal National Orthopaedic Hospital to support his spine, but his curvature has now worsened and the bone is fighting against the metalwork. He is in constant, appalling pain because his ribs are grinding against his hip bones. He referred himself back to RNOH in 2002, and the back specialist said that he could do further surgery. However, in the mean time Kamran had, by pure chance, met someone doing research into the bone density of disabled sportsmen. Out of curiosity, Kamran checked out his own bone density and discovered that it was very poor. The consultant, when informed of this, refused to do the surgery until his bones were strengthened. Kamran now wonders whether anyone would have picked it up, had he not done so, and whether the operation would have resulted in potentially disastrous consequences. No one had ever alerted him to the danger that he was in from osteoporosis. Kamran has had regular bone-strengthening injections over the past four years, which have been pretty gruelling and ultimately not effective as his bone density constantly yo-yo’s, going up and then down again. He is now in a desperate situation with the pain, and is only coping by spending every night and all weekend on traction in hospital, then coming into work each day. This is an appalling quality of life in anyone’s book. His bone specialist consultant wants to prescribe Teriparatide, a drug which helps to regenerate bone. It can only be given for a maximum of two years and would cost £15,000 over that time, but at present it has only been cleared for women with osteoporosis over the age of 65. The consultant cannot prescribe it under the NHS unless the PCT will pay for it, and Barnet PCT is refusing to do so because of the cost. It could fund the drug, but is making use of the fact that it has not been cleared for younger people. Kamran has represented himself to the PCT panel twice on appeal, and has been refused. He is going for the final time in November. What sense is there to this short-term, wasteful, blinkered silo mentality to funding? The cost of this drug is hugely outweighed by the cost of not funding it—the huge personal cost to Kamran, who is in constant severe pain, spending every night and all weekend on traction in hospital. This drug is his only hope to improve his physical situation, otherwise he is faced with a future of having to give up work and be supported by the state, not only for his income, but also for his care. And what about that cost to the state, which he is trying to avoid? The state will be spending far more than £15,000 well within a year of him having to give up work, with escalating costs into the future. I declare an interest in the cost to HAFAD, Hammersmith and Fulham Action on Disability, the organisation of which he is director and I am the vice-chair. HAFAD is a sizeable local organisation of disabled people with a budget of approximately £800,000, about 20 staff, plus many volunteers. Kamran is an outstanding director who manages to fund and hold together a whole raft of projects, from welfare benefits advice to holiday youth schemes and support for direct payments, which help to provide equal opportunities for disabled people in the borough. He has established a thriving employment project, helping disabled people back to work, and is striving to turn the organisation into a social enterprise so that it can be self-financing— everything that the Government are aiming for in national policy for disabled people. But much of that would collapse if he was forced to give up. Kamran’s experience shows the waste and tragedy that can result from fragmented services. Nowhere in the system is there recognition of what he contributes to society. Within the NHS, there has been no one who has treated his needs as a whole. As a result, since he had not seen his back specialist for over a year while he was getting the bone treatment, he then had to return to the bottom of the waiting list when he was re-referred for surgery, all adding to his frustration, pain and distress. Surely this is a glaring example of the need for the Independent Living Bill championed by my noble friend Lord Ashley of Stoke, which was passed by your Lordships’ House but which has now fallen in the other place. His Bill would ensure that health and social services work together and pool their budgets so that the funding is used to provide the service which disabled people both want and need, and not wasted in this bureaucratic minefield. Most importantly, Kamran’s bone density condition should never have reached this severe state. Why was preventive action not taken years ago? Why was it that it was only his curiosity which led him and his surgeon to know that his bones were crumbling? It is accepted that there are a number of long-term conditions which put people at a higher risk of osteoporosis—I have mentioned only three—so I ask my noble friend the Minister whether the Government will take urgent steps to raise awareness of the need for preventive treatment for osteoporosis, both among the medical profession and the disabled community? With government policy emphasising the need for people to take responsibility for their own health, it is essential that disabled people are made aware of the potential risks. I am advised by Mr Fadel Derry, a spinal cord injury consultant at Stoke Mandeville Hospital, that osteoporosis is so common among spinal cord injured people that the use of bone density scans is actually academic and a waste of resources. In his view, it would be far more cost effective if the funding for prevention was channelled into the provision of standing frames and standing wheelchairs, which have other benefits as well. Would my noble friend give her support to this? Furthermore, it is clear that too little is known about the effect of drugs in preventing osteoporosis among long-term paralysed people. Would the Government support research into both primary and secondary prevention in spinal cord injury and polio using biphosphonates to produce evidence of the effectiveness of the long-term use of these drugs? Would the Government also encourage NICE to include at least one spinal cord injury specialist in drafting the guidance on preventive drugs? Considerable improvement also needs to take place within the NHS in the treatment of long-term paralysed people once they have sustained a fracture. GPs, accident and emergency teams and orthopaedic surgeons are not sufficiently aware that the treatment of a long-bone fracture in someone who is paralysed often needs to be quite different from treatment given to a non-paralysed person with osteoporosis, otherwise severe complications will arise—for example, there is considerable ignorance of the danger of pressure sores while the bone is in plaster. The pressure on specialist centres such as spinal cord injury centres as a result of these failures in treatment is considerable. I am extremely grateful to my noble friend Lady Quin for having raised this important topic. I hope that it will lead to much greater attention being paid to all the groups who are at high risk of osteoporosis, not only post-menopausal women.