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Healthcare for London - response from the MS Trust

Introduction

Multiple sclerosis is the leading cause of disability in young adults. People are typically diagnosed at a median age of 30 years. Over time, MS normally becomes progressive, debilitating and causes complex disability. Life expectancy with MS is similar to normal so consequently management of MS is a long-term team effort.

MS is a variable condition. However, the majority of patients will develop a range of fluctuating symptoms, both physical and cognitive, which take time to assess and manage. Additionally, significant levels of coexisting conditions such as depression are found in any MS patient population.

Studies have estimated that within five years of diagnosis, 70-80% of people with multiple sclerosis are likely to be unemployed.[1] European studies also estimate that health costs for individuals with MS who are not well-supported run in significant excess of £40,000 per person per year.[2] Recent research suggests that treating relapsing/remitting MS around the time of diagnosis with an immune-modulator will postpone long-term disability.[3]

Therefore we propose the following model of care based on NICE Guidelines for the management of multiple sclerosis and on the National Service Framework for Long-term Conditions.[4,5] Both these pieces of guidance have lacked any consistent implementation and yet properly used, can bring about cost-savings to the NHS in terms of reduced unplanned admissions, reduced length of stay, improving rates of employment among the MS population and general health promotion in an often difficult population.

Estimated prevalence and incidence of MS in the consultation area

There is no national register of MS so no exact figures exist. However, the estimated standard prevalence rate is that 100-120 people per 100,000 population have MS.[6] This gives an estimated population of 8,500 - 10,000 people in the consultation area, given the population under discussion. Their exact distribution is not known. Incidence is estimated at 4 per 100,000 per annum, which gives an approximate incidence of around 330 cases per year in the area under consultation.

Incidence in adults and children born in Europe is broadly similar to that of the UK. Incidence is lower in adults who have migrated to the UK from Africa and Asia but is the same in British-born children of these immigrants or children who immigrated before the age of 15.[6]

Healthcare for London's proposed model

The MS Trust welcomes the five principles that underpin the proposed model of care, particularly the indication that regionalised specialised services should be provided to improve the quality of care. However, for MS as for a number of autoimmune conditions, we would point out that prevention is impossible as there is currently no identified trigger for a condition that is neither predictable nor preventable.

As a medical condition, MS straddles many of the proposed domains of healthcare. People with MS may, at some point in their condition, require acute care, planned care, long-term conditions care, end-of-life care and mental health services. Although the underlying principles of the consultation are relevant, MS does not fit neatly into the models of care outlined so we propose a more detailed model of how care might work for MS below.

One item is of note: the long-term conditions section notes an intention to develop London-wide guidelines for managing long-term conditions. As national guidelines exist for managing MS, in the form of the NICE Guideline for the management of multiple sclerosis. Clinical Guideline 8, and the National service framework for long-term conditions, which is focused on neurological conditions, we would expect to see these fully adopted rather than reinventing the wheel for London-wide guidance.

However, commissioning of services would be significantly eased by an MS-specific clinical pathway. One is currently in development in conjunction with the Department of Health and we will alert you to this once completed.

MS Trust proposed model of care for multiple sclerosis

Commissioning specialist services is key to efficient MS management.

At the moment, we would hope to see commissioning as outlined below, but see also note a.

1. SHA-level commissioning by the Specialised Commissioning Group to ensure that all PCTs have equal access to and appropriate clinical pathways for referring difficult cases to tertiary care where appropriate. Tertiary care is provided in local specialist centres and we also encourage commissioners to recognise the super-specialist centre of the National Hospital for Neurology and Neurosurgery, part of University College Hospitals NHS Foundation Trust.

Tertiary care is envisaged as being necessary for example:

  • for cases of disputed or uncertain diagnosis, rare or unusual variants of MS such as Marburg's or neuromyelitis optica, estimated at 5% or less of the population.
  • for complex inpatient neuro-rehabilitation and for complex symptomatic management, eg intrathecal baclofen. These are unusual and estimated at 10% or less of the MS population.
  • for complex psychiatric assessment and support (rare) to an identified London centre with a neuropsychiatrist, including inpatient care. This is very rare, estimated at less than 1% of the MS population.[7] Given the rarity of neuropsychiatry services, we recommend those at the National Hospital for Neurology and Neurosurgery.
  • specialist centre for ongoing management of children with MS under the age of 16. These are currently estimated at 4% of new cases, or around 15 cases per year.
  • specialist centres for young people diagnosed between the ages of 16-21 currently account for around 5% of annual incidence, so approximately 17-20 cases per year.[6] We recommend that the SHA SCG identifies specialist centres that can deal with this.

2. Sector-level commissioning to ensure equity of access across London providing:

  • prompt referral for diagnosis at specialised centres, probably the current disease modifying drug prescribing centres.[4] These are listed in note b
  • ess to an MS specialist nurse for everyone affected by MS from the point of diagnosis onwards (see below)[4]
  • prompt access to relapse assessment and treatment, within 7 days of the start of a relapse as recommended by the European Federation of Neurological Societies' taskforce[8]
  • prompt referral to specialised prescribing centres for disease-modifying treatment, for individuals who meet the Association of British Neurologist's prescribing guidelines. This will be the majority of newly diagnosed patients within three years of diagnosis.[9]
  • appropriate and timely access to specialised inpatient neurorehabilitation (see note c below). We anticipate that at any one time this will be around 10-20% of the MS population, varying from people in a significant relapse needing to return to work, to those more severely affected[5]
  • appropriate and timely access to vocational rehabilitation. We anticipate that up to 70% of the MS population may be able to work, given the appropriate help and support[5]
  • appropriate and timely access to community-based rehabilitation (see below). We anticipate that at any one time this will be around 10% of the MS population[5]
  • appropriate and timely access to mental health support, particularly psychological services for people with MS, who typically have higher than average levels of depression and anxiety than the general population. The majority of mental health issues in MS are mild to moderate and resolvable by a combination of medication and talking therapies. Research has shown that around 25% of the MS population may have depression or anxiety at some time in their life.[4,7]
  • timely access to short- and long-term respite care that is appropriate to the neurological needs and the age-group for people with this condition (ie mostly under 65), including end-of-life care.[5] Around 10-15% of the MS population at any one time may need access to short-term respite care. A small number of people with MS, approximately 3-5% of the MS population, live in long-term care settings. In both cases, most of these people are aged under 65. Providing care will involve integrated commissioning of services, and may require commissioning support from third-sector organisations such as Sue Ryder Care. MS specialist nurses have a role here in teaching and supporting care organisations to provide appropriate levels of support.[5]
  • Timely, equitable and appropriate access to equipment. We would support integrated equipment supplies across London to ensure equality of access, particularly in significant areas such as wheelchair provision. At any one time, we anticipate that around 25% of the MS population will need some form of equipment or adaptation to aid activities of daily living.[5]

Resource implications

MS management and the development of specialised services have made significant advances over the last decade, but progress has slowed in the recent period of reorganisation and financial constraint. As an unusual and specialised condition, there is always a risk that MS healthcare professionals will be isolated in practice. Therefore, it is vital that all MS healthcare professionals are supported in a sector-wide managed clinical neuroscience network. However, we also recognise that to deliver the type of service outlined above, the human resource implications are as follows:

MS specialist nurses

We welcome Healthcare for London's proposal that specialist help should be available close to home, in community settings as well as in specialist centres. MS Specialist nurses are ideally placed to provide that help. Research has shown that they are instrumental in reducing the number of unplanned admissions and length of stay by people with MS, and are significantly cost-effective[11]

Current best practice guidelines suggest a caseload of 300 people with MS to each MS specialist nurse.[12] For the area under consultation, this would mean a total of 28 MS specialist nurses. We would suggest that these should be provided in an even split, so that each specialist centre should employ 1-2 full-time MS specialist nurses alongside a similar number working across PCTs in each regional sector. It is important that community-based MS specialist nurses should be empowered to conduct domiciliary visits for individuals who are no longer able to travel even quite short distances, as well as holding regular clinics in a number of different community settings.

Psychological services

Psychology services, especially neuro-psychology services are currently under-resourced. It is not uncommon for a hospital neuro-psychology service to assess an individual with MS but then discharge without treatment to non-existent community psychological services. It has been estimated that there is a lifetime prevalence of around 25%-50% of serious depression in people with MS, or around three times that in the general population.[7] Therefore, each London sector should commission specialist neuro-psychological services at specialist centres, but ensuring sector-level community psychological support or at least 1 full-time psychologist per London sector.

Therapy services including rehabilitation services

Access to physiotherapy, occupational therapy and speech and language therapy are currently under-resourced. We anticipate that the majority of the MS population - around 90% - will at some point access rehabilitation and therapy services. This probably equates to around 15% needing therapy services at any one time.

We welcome Healthcare for London's suggestion of rehabilitation close to home. We envisage a two-tier system whereby very specialised help is available in specialist centres, with specialist neuro-therapy teams upskilling therapists in local community settings to ensure they are providing the best available care to individuals in their locality. We envisage a need for a full therapy service - of at least one physiotherapist, occupational therapist and speech and language therapist specialising in adult therapy - in each PCT.

Access to speech and language therapists is particularly significant for individuals with advanced MS to pre-empt difficulties with communication and swallowing which can significantly reduce quality of life in late-stage MS. This is a small number of people with MS, probably around 3% of the population at any one time. Speech therapy is under-resourced and we would anticipate recruiting at least one specialist speech and language therapist to cover London. Their remit must include upskilling local therapy teams.

Equipment services including wheelchair services

Currently under-resourced, these are not mentioned in Healthcare for London but can be a vital source of help or frustration for people with MS. It is essential that equipment supplies across London are integrated, and that they use the same criteria for assessment to ensure equality of access and provision.

Notes

a) We note that in The operating framework for the NHS in England 2008/9, it states in section 3.11 that 'we expect Specialised Commissioning Groups to create pooled budgets and to commission the majority of specialised services on their patch this year, extending this to all specialised services in 2009/10'. Currently, all adult neurology and neurorehabilitation (excluding stroke) is covered by Specialised Services National Definition Set: 8 Specialised neurosciences services (adult). So it may be that all sector-level and SHA-level services will need to be commissioned by the SCG.

b) Current prescribing centres in the consultation area are:

  • Charing Cross Hospital
  • Chelsea and Westminster Hospital
  • Epsom General Hospital, Surrey
  • Frimley Park Hospital, Surrey
  • King's College Hospital
  • National Hospital for Neurology and Neurosurgery
  • Oldchurch Hospital & Queens Hospital, Romford
  • Queen Elizabeth Hospital, Woolwich
  • Princess Royal University Hospital, Bromley
  • Royal Free Hospital
  • Royal London Hospital
  • St George's Hospital, Tooting
  • St Thomas's Hospital

c) The London Specialised Commissioning Group (London SCG) is made up of the following 9 specialised neurorehabilitation services for adults (over 16 years) providing inpatient care for patients needing complex specialised neurorehabilitation:

  • Brain Injury Rehabilitation Unit (BIRU), Edgware Hospital
  • Frank Cooksey Rehabilitation Unit, King's College Hospital
  • Regional Neurological Rehabilitation Unit (RNRU), Homerton University Hospital NHS Foundation Trust
  • Lishman Brain Injury Unit, Maudsley Hospital
  • Neurological Rehabilitation Unit (NRU) National Hospital for Neurology and Neurosurgery
  • Regional Rehabilitation Unit (RRU), Northwick Park Hospital
  • Blackheath - Thames Brain Injury Rehabilitation Centre
  • Wolfson Neurorehabilitation Centre, St Georges Hospital, Wimbledon
  • Royal Hospital for Neuro-Disability, Putney

References

  1. Kornblith AB et al. Employment in individuals with multiple sclerosis. Int J Rehabil Res 1986;9(2): 155-165.
  2. Tyas D et al. The distribution of the cost of multiple sclerosis in the UK: how do costs by illness severity vary? Value in Health 2007; 10(5): 386-389.
  3. Thrower B. Clinically isolated syndromes: predicting and delaying multiple sclerosis. Neurology 2007; 68 (24 Suppl 4): S12-15.
  4. NICE. Management of multiple sclerosis in primary and secondary care. Clinical Guideline 8. London: National Institute for Clinical Excellence. 2003.
  5. Department of Health. The National Service Framework for Long-term Conditions. London: DH; 2005.
  6. Compston A et al. McAlpine's Multiple Sclerosis. Fourth edition. London: Churchill Livingstone; 2005.
  7. Feinstein A. The clinical neuropsychiatry of multiple sclerosis. Cambridge: Cambridge University Press; 1999.
  8. Sellebjerg F et al. EFNS guideline on treatment of multiple sclerosis relapses: report of an EFNS task force on treatment of multiple sclerosis relapses. European Journal of Neurology 2005; 12(12):939-946.
  9. Association of British Neurologists. ABN Guidelines for treatment of multiple sclerosis with B-interferon and glatiramer acetate. London: Association of British Neurologists; 2007.
  10. Department of Health. The National Service Framework for Long-term Conditions. London: DH; 2005.
  11. Johnson J, Goldstone L, Smith P. Evaluation of MS specialist nurses. London & Letchworth: South Bank University & MS Trust; 2001.
  12. MS Trust, United Kingdom Multiple Sclerosis Specialist Nurse Assocation, Royal College of Nursing. Specialist nursing in MS - the way forward. The key elements for developing MS specialist nurse services in the UK. MS Trust: Letchworth Garden City; 2001.