Health and Social Care Bill

My Lords, I also have an amendment in this group. For the convenience of the House, I have left it there because it concerns the clinical commissioning group's function. On 27 February, the Minister rejected the amendment that I had tabled, which provided that the Commissioning Board must ascertain that clinical commissioning groups commission for less common conditions and that they collaborate. Today is Rare Disease Day and my amendment specifically addresses rare diseases. In responding to me on 27 February, the Minister cited sources of advice that are available to patients, healthcare professionals and carers, specifically NHS Choices and NHS Evidence. I have been to their websites to find out how they inform commissioning for some of these rarer diseases. They are very helpful websites and they are a resource, but they are enormously complex. Trying to read across from one condition to another to put together a cohesive package for commissioning is very difficult. I am concerned that replicating this in lots of small clinical commissioning groups all around the country will be, in effect, a duplication of effort. For some of these conditions there is no NICE guidance at all as yet. NICE does a fantastic job by producing the guidance that it does but it is not there for everything. The European Union's recommendation of an action in the field of rare diseases has been published. The Minister informed us that there will shortly be a consultation on the Government's response to that. What are these conditions? They range across 5,000 to 8,000 different diseases, which occur at an incidence of less than five cases per 10,000 of the population. However, most of these people suffer from diseases that are so rare that they affect less than one person in 100,000 of the population. The European Union recommends that member states should have plans and strategies in this field and adequate definition, codification and inventories of these diseases and research into them. It also recommends that member states should establish centres of expertise with a European reference network, gather expertise and empower patient organisations. These objectives are compatible with the amendments in the name of the noble Baroness, Lady Cumberlege. The European guidance also states that these services should be sustainable. However, given that the prevalence of these diseases is so low, it would not be cost-effective routinely to commission services in populations of fewer than 250,000. These amendments are supported by more than 98 patient organisations, 70 of which are members of the Neurological Alliance. There is concern about the application of the appropriateness test to clinical commissioning groups. The biggest area in this context often relates to rehabilitation and aftercare and comprises people with severe anorexia and those who are rehabilitating after a severe head injury or major trauma or stroke and quadriplegia. An increasing number of survivors are coming back from our theatres of war who would previously have died of their injuries. They require complex rehabilitation. Sadly, there are already instances where some of these soldiers are not able to obtain the prosthetic support that they require and are having to raise funds themselves to obtain their prostheses, and some are going to the United States for this provision. Some people may think that stroke is a common occurrence and therefore does not come into this category. However, some types of stroke are complex and occur infrequently in the population. Stroke comprises a very broad spectrum of diseases. Some of the rehabilitation and services required fall to local authorities to provide. There is concern about the extent to which the appropriateness test will be applied and where discretion will lie as regards these conditions. As I said, the clinical commissioning groups cover relatively small population areas and therefore it is not cost-effective for them to commission services for less common conditions. I am concerned that they will have no duty to collaborate with other clinical commissioning groups in commissioning services. One hopes that they will but there does not seem to be a requirement that they should. If commissioners lack adequate guidance on best practice in commissioning comprehensive and equitable services, they risk commissioning services which do not provide value for money and do not meet the needs of people with these less common conditions. The National Audit Office report on services for people with neurological conditions showed that there is a great need for improvement in service provision for this population, with significant variation in access to services and variation in quality in different areas. Even where there are localised examples of good practice, sometimes leadership is lacking on the outcomes analysis so these bodies are not able to disseminate their good practice for wider implementation. The Bill certainly provides opportunities for collaboration between clinical commissioning groups, but not encouragement or incentives to do so, and these groups are left to determine when to co-operate. This amendment would provide an important indicator for clinical commissioning groups and would bridge the strategic gap between the commissioning that will be done centrally by the Commissioning Board and that which will be done at a local level. I give a very simple example of a neurology service involving someone with motor neurone disease who requires non-invasive ventilation. That service should be provided in patients' homes or somewhere nearby. If it is not provided to a high standard, patients have a much higher chance of ending up as emergency admissions—in fact, this is almost inevitable—and the cost of that provision is three times that of providing adequate NIV services. It therefore becomes very cost-effective to ensure that there is appropriate commissioning for this group across the piece. The risk is that the disparity in service provision and outcomes will widen. I stress that the difficulty comes because these patients sit in the spectrum between what will be commissioned centrally by the Commissioning Board, what will fall to the clinical commissioning groups and, when patients get into long-term care and rehabilitation and being sustained at home, what will fall to the local authority—and that has not been made clear. I will listen very carefully to the Minister's response because this matter is so important that we may need to test the opinion of the House. I am hoping that I will get satisfactory answers from him and that these discrepancies will be clarified. If not, I ask him, if he is unable to provide adequate answers, to consider these issues at Third Reading. I beg to move.