Commissioning - Health Committee Contents


Written evidence from Rare Disease UK (COM 71)`

SUMMARY

    — There are many issues facing commissioning of specialised services currently, most notably the inequitable provision of services and a "postcode lottery".

    — The changes proposed in the NHS White Paper pose both threats and opportunities to services for patients with rare diseases.

    — Due to the insufficient knowledge of rare conditions at a local level, the NHS Commissioning Board should be responsible for those specialised services currently commissioned at a regional and national level.

    — The budget for specialised services must be allocated directly to the NHS Commissioning Board specifically for specialised services. This budget must be flexible to allow for expansion of the number of specialised services.

    — It is crucial that engagement is facilitated between the NHS Commissioning Board and GP consortia to ensure that services commissioned at both levels are integrated and that there are no gaps in service provision.

ABOUT RARE DISEASE UK

  1.  Rare Disease UK (RDUK) is the national alliance for people with rare diseases[122] and all who support them. We have over 550 registered members including: over 130 patient organisations, clinicians, researchers, academics, industry and individuals with an interest in rare diseases.

  2.  It is estimated that one in 17 people will be affected by a rare disease at some stage in their lives. This amounts to 3.5 million people across the UK. Collectively, rare diseases are not rare.

  3.  RDUK was established by Genetic Alliance UK, the national charity of over 130 patient organisations supporting all those affected by genetic conditions, in conjunction with other key stakeholders in November 2008 following the European Commission's Communication on Rare Diseases: Europe's Challenges.

  4.  Subsequently RDUK successfully campaigned for the adoption of the Council of the European Union's Recommendation on an action in the field of rare diseases. The Recommendation was adopted unanimously by each Member State of the EU (including the UK) in June 2009. The Recommendation calls on Member States to adopt plans or strategies for rare diseases by 2013.

  5.  RDUK is campaigning for a strategy for integrated service delivery for rare diseases. This would coordinate: research, prevention and diagnosis, treatment and care, information and commissioning and planning into one cohesive strategy for all patients affected by rare disease in the UK. As well as securing better outcomes for patients, a strategy would enable the most effective use of NHS resources.

  6.  Robust commissioning structures enabling the effective service delivery for patients with rare diseases should form a key element of a strategy for rare diseases. As a result, we welcome the opportunity to submit evidence to this document.

SPECIALIST COMMISSIONING FOR RARE DISEASES

  7.  Patients with rare diseases are likely to need access to health services commissioned at different levels, from local health services and social care which a patient is likely to use most frequently, to specialised services commissioned on a national basis, and from both a chronic and acute position of need. An effective commissioning structure for rare diseases needs to ensure effective integration of those commissioning services at the local level and those commissioning specialised services.

ISSUES CURRENTLY AFFECTING COMMISSIONING OF SERVICES FOR PATIENTS WITH RARE DISEASES

  8.  RDUK established a multi-stakeholder Working Group on Commissioning and Planning. The findings of the Working Group, along with four others, will be published in a report on a strategy for rare diseases next year. The initial findings of the Group are as follows.

  9.  Apart from those services commissioned on a national level by NHS Specialised Services, there is a wide variation in the services available for patients with rare diseases across England due to the decisions taken at different levels of the commissioning structure. Care is not of an equal quality for all patients with any particular condition throughout the UK. The "postcode lottery" still exists whereby some patients are provided with a carefully planned programme of support and treatment (including drugs and other interventions where appropriate) and others are not, purely as a consequence of variations in the pattern of services locally or regionally planned and commissioned.

  10.  The Specialised Services National Definitions Set (SSNDS) sets out definitions of 34 specialised services each with a planning population of more than one million. The SSNDS exists to identify those services that are specialised and therefore should be subject to collaborative commissioning by Primary Care Trusts (PCTs) through the ten regional Specialised Commissioning Groups (SCGs). Many of the services outlined in the SSNDS will be accessed by patients with rare diseases. These arrangements have proved ineffective as currently none of the regional SCGs commissions all the services in the SSNDS; and not one SCG commissions the same services as another. This therefore results in unequal levels of care for a particular condition throughout the country.

  11.  There is often a lack of transparency, communication and structure in commissioning guidelines and what should be funded by whom. This leads to confusion and can result in a delay in patients receiving the necessary services at the best time.

  12.  Funding for specialist services for patients with rare diseases is perceived by some to be diverting resources away from local services. Rather this is a mechanism to ensure that patients with rare diseases have access to the services and expertise they need, planned and commissioned at the appropriate level, whilst ensuring local bodies do not have to bear a disproportionate financial burden. This negative perception could pose a threat to specialised services at a time of efficiency savings as those commissioning services at a local level look to protect their budgets at the expense of good-quality, cost efficient care for specialised services. This negative perception is aggravated by the current funding method for national and regional commissioning ie the top-slicing of funds for national commissioning and the pooling of funding by PCTs for regional commissioning.

  13.  Patients who have access to a specialised service for their condition have better experiences than those that don't. However, there are not specialist services available for every rare condition, and this can result in inequitable levels of care depending on which condition a patient has. It is not possible to designate a specialised service for every rare condition, especially as there are over 6000 rare conditions and some rare conditions are too rare or insufficiently well understood. But this should not preclude patients from being able to access good-quality care.

  14.  Specialist services for rare conditions have developed in an ad-hoc fashion. Services often gain national designation as a result of proactive moves by a strong patient organisation and interested clinicians. We have heard from our members that the application process is also becoming increasingly burdensome. This is clearly inequitable as in particular, most patient organisations for rare diseases (if they exist at all) are small and do not have the resources to undertake this work.

SPECIALISED COMMISSIONING POST-WHITE PAPER

  15.  Whilst the detail of the proposals in the Government's White Paper, "Equity and Excellence: Liberating the NHS" and the supporting consultation document "Commissioning for Patients" is not completely clear, the proposals do provide both opportunities and threats to services for patients with rare diseases.

  16.  The White Paper has a strong emphasis on the benefits of localism. However, this is not always best in order to understand the health needs of the patients we represent. The strength of GPs lies in their understanding of a broad range of conditions that they see on a regular basis. There are over 6000 rare diseases and GPs may only come across some of these conditions once (if at all) in the duration of their careers. Many patients with rare diseases have complex needs and GPs do not have the knowledge necessary to understand what services are necessary to meet these needs the majority of the time.

  17.  The most "common" single rare disease will affect around 25,900 people[123] in England (the vast majority of rare diseases affect far fewer people). If this maximum figure is distributed evenly across the current 151 PCTs then each PCT would have 171 patients with this condition.[124] If GP consortia cover smaller population bases than PCTs do currently, then they will cover even fewer patients with that condition. It seems doubtful whether the expertise will be available to commission all the services necessary for the most "common" rare diseases, let alone the majority of rare diseases which affect far fewer people. There is a real danger that these conditions could be overlooked.

  18.  The proposals do not indicate what population bases GP consortia will cover, although we understand that they are likely to be smaller than PCTs currently. This means that a large number of services could fall in the area between being too low-incidence to be commissioned by individual GP consortia and too high volume to require a planning population greater than 1 million as the SSNDS currently provides for. The commissioning of those services that fall between these thresholds should be carefully monitored to ensure they are available equitably to people across England. A key component of the duty of the NHS Commissioning Boards to hold consortia to account should be to ensure that patients of consortia have access to services commissioned at the level above a consortium-unit volume of population.

  19.  For these reasons, RDUK strongly endorses proposals for the NHS Commissioning Board to take responsibility for commissioning specialised services. We believe that the Board should have responsibility for commissioning those services currently commissioned at a national level and those services listed in the Specialised Services National Definitions Set (SSNDS) currently commissioned by regional specialised commissioning groups (SCGs).

  20.  The establishment of the NHS Commissioning Board provides the opportunity to address some of the issues inherent in the commissioning of specialised services currently, most notably the weaknesses of the SCGs in delivering equitable service provision across England.

  21.  While we regard the positioning of all specialised commissioning responsibilities in the NHS Commissioning Board as sensible, we recognise in practice this may need a devolved regional structure that allows proper understanding of regional variations and to help ensure integration between services commissioned by GP consortia and specialised services. However, any regional system must be under tighter central control by the Board to avoid the present situation which has led to wild inconsistencies in service provision.

  22.  The budget for specialist services that are currently commissioned must be allocated directly to the NHS Commissioning Board specifically for specialist services. This budget must take into account that, as the SCGs do not currently commission all the services in the SSNDS, their expenditure may not adequately reflect the budget that the National Commissioning Board will need to provide an equitable service across England.

  23.  The budget for the NHS Commissioning Board must also be flexible to allow for new services to be commissioned when evidence shows a need for services to be commissioned at this level in order to provide good quality and equitable services.

  24.  In reality, there will never be a specialised service for each of the 6000 plus rare diseases. However, commissioning structures should be flexible to allow patients to access services, not specifically designated for their condition, but that they would benefit from nonetheless as many of the effects or services needed may be similar.

  25.  It is crucial that engagement is facilitated between the NHS Commissioning Board and GP consortia to ensure that services commissioned at both levels are integrated and that there are no gaps in service provision.

  26.  Rare Disease UK believes there should be a designated expert accountable for commissioning for rare diseases on the NHS Commissioning Board. This member should work closely with the National Clinical Director for Rare Diseases (as proposed in the Chief Medical Officer's report of 2009) who RDUK would like to oversee the implementation of a strategy for rare diseases.

October 2010







122   A rare disease is defined as a condition affecting less than five in 10,000 people in the UK. Back

123   Based on the Office of National Statistics Population Estimates June 2010-http://www.statistics.gov.uk/pdfdir/pop0610.pdf Back

124   In reality the distribution would not be even due to greater prevalence in certain populations eg some conditions are more common in population sub-groups. Examples include thalassemia in Mediterranean populations, and the increased prevalence of recessive single gene genetic conditions in people of Pakistani origin. Service planning should take into account any such local needs. Back


 
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