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The Scleroderma Society Bride House 18-­‐20 Bride Lane London EC4Y 8EE Office 020 7000 1925 Helpline 0800 311 2756 info@sclerodermasociety.co.uk www.sclerodermauk.org President: Professor Dame Carol Black DBE, FRCP, FMedSci Vice Presidents: Professor CP Denton PhD, FRCP Professor A Herrick FRCP, MD Friday, 08 May 2015
RE: Evaluation of the Individual Funding Request Process
The Scleroderma Society welcomes the opportunity to comment on this consultation. With
involvement from the Scleroderma Society, scleroderma patients and scleroderma
specialists, the Scleroderma Society would like to submit the following comments to form
part of the consultation process.
Please tick which recommendations you are providing feedback on
Recommendation 1 – Revising the existing exceptionality criteria
Recommendation 2 – Establishing regional scrutiny committee(s)
Recommendation 3 – Increased transparency
Recommendation 4 – Establishment of a Special Medicines Fund
Recommendation 5 – Re-introduce prescription charges to resource the Fund
The Scleroderma Society is a company limited by guarantee and not having a share capital. Registered in England. Company No. 01704872. Registered address: 37 Warren Street, London W1T 6A. Trustees: S Hoare, H Rozga Recommendation 3
That the existing IFR guidance should be revised to include greater transparency.
It is recommended that the Department working in partnership with the HSCB, HSC Trust
and the Patient Client Council (PCC) should conduct further work with clinicians and patient
representatives to ensure that there is absolute clarity regarding the process itself and
professional roles. This work should also consider the collection and recording of data
relating to specialist treatments.
Q1. Do you agree that the process would benefit from a greater level of transparency?
Strongly agree
We fully agree with this proposal and believe that clarity and transparency are essential to
meeting patient expectation. For the case of scleroderma, patients with active digital ulcers,
a number of patients have been unable to start treatment due to the inconsistent IFR criteria.
As a result it has been reported that amputations have taken place. These patients have a
right to understand why treatment has been declined.
It has more recently become apparent that there is a process associated with the IFR policy
available whereby patients at risk of imminent, significant and irreversible clinical
deterioration might receive funding. Significant work needs to be done to publicise this
funding route to access treatment.
Access to specialist drugs is an important issue for people with scleroderma in Northern
Ireland and UK wide. Scleroderma is an umbrella terms for a variety of condition some of
which are extremely complex and include organ involvement. Patients require access to
treatments to prevent disabilities and deformities, to improve their quality of live and
ultimately to prevent morbidity. A change in the way Individual Funding Requests are
assessed in Northern Ireland would make it more likely that eligible patients could access
the treatment they need.
Q2. Do you agree that increased transparency would have a positive impact on
patients’ and clinicians’ confidence in the process?
Strongly agree
There is a lack of confidence and trust in the present system. People with scleroderma do
not feel that the Health Service in Northern Ireland is acting in their best interests. Increased
consistency, transparency, clarity and timeliness of communication would assist with this.
The Scleroderma Society is a company limited by guarantee and not having a share capital. Registered in England. Company No. 01704872. Registered address: 37 Warren Street, London W1T 6A. Trustees: S Hoare, H Rozga The added stress of geographical inequality to access to necessary treatment can apply an
additional layer of distress to the individual subsequently heightening the symptoms they
might experience.
Recommendation 5
In order to resource the new fund, the Department should re-introduce charging for
prescriptions.
In view of the current financial position, and the need to invest in services such as the
provision of new specialist drugs, this is an appropriate time to reconsider the provision of
free prescriptions in Northern Ireland. The additional funding provided through this would be
used to put funding for specialist medicines on a secure financial footing.
Q1. Do you agree that it is reasonable for patients to make a contribution towards the
costs of their prescriptions, particularly in light of the challenges of funding high cost
specialist medicines?
Strongly disagree
The Scleroderma Society strongly opposes the suggestion of making patients contribute
towards the costs of their prescriptions. People with long-term conditions, such as
scleroderma can be on a variety of medicines for the majority of their lives. The payment of
these drugs will have severe implications to their financial situation and potentially put their
lives at risk, particularly to those with restricted income and suffering from a variety of
conditions.
Prescription charges are a barrier to people with long-term conditions obtaining the
medications they require. Subsequent cost implications at a national level would develop – if
the patient is unable to adhere to their prescriptions due to associated costs then they are
more likely to require emergency and overnight hospital stays.
A universal charge would severely disadvantage the young and elderly as these are groups
are more vulnerable, suffer from co-morbidities and therefore more likely to require repeat
prescriptions.
A list of exemption categories would also unfairly disadvantage those with long-term
conditions. People with long-term conditions often struggle to remain in work. Unless the
exemption list included all long-term conditions then this group would be disadvantaged.
Additionally, rare diseases often require a variety of long-term and often more expensive
medications. Rare diseases account for 3.5 million people in the UK, 5% of the population.
There are 7,000 different rare diseases, and this list is continuously growing. It is paramount
The Scleroderma Society is a company limited by guarantee and not having a share capital. Registered in England. Company No. 01704872. Registered address: 37 Warren Street, London W1T 6A. Trustees: S Hoare, H Rozga that we ensure that this population is able to continue with their treatment and that their
health outcomes are not determined by their socio economic background.
As a member of the Prescription Charges Coalition (PCC) the Scleroderma Society fully
support the comments articulated in their response. Research undertaken by the PCC
highlights the implications of introducing these charges, as detailed in their feedback.
Findings clearly demonstrate the negative implications of these charges. We strongly urge
reconsideration of this.
Q2. What do you consider would be the most appropriate way to apply such a
charge?
We strongly suggest that charges are not implemented for those with long-term conditions
for the reasons detailed in answer to question 1.
Prior to consideration of the introduction of prescription charges we believe that alternative
funding options should be fully explored first. In addition, a full assessment of the potential
health outcomes as a result of prescription charges should also be undertaken to identify the
costs of the long-term impacts. This is an area the Scleroderma Society would happily be
involved in for providing evidence of the effects to people with long-term, complex and rare
conditions.
Once all alternative funding routes have been explored and it is unavoidable to introduce
prescription charges then a possible alternative would be to have them means tested. This
would include a cap for how much one person is expected to pay, which could be identified
by their household income. The amount should not be determined by the cost of their
medication(s) – there should be a flat rate per prescription. To reiterate, this should only be
explored once alternative funding routes have been fully investigated and should not apply
to those with long-term conditions, the elderly or the young.
Individuals with rare or long-term conditions should not be disadvantaged due to their
condition and we should ensure that they have access to the necessary medications
regardless of their income or background.
The Scleroderma Society is a leading UK charity dedicated to supporting diagnosed
individuals and their families whilst actively raising awareness and funding research. The
development of these comments includes views and expertise from scleroderma patients
and clinicians. If you require any additional information please do not hesitate to get in touch.
We look forward to the processes developments.
Chloe Kastoryano
Chloe@sclerodermasociety.co.uk
Policy and Research Advisor, The Scleroderma Society
The Scleroderma Society is a company limited by guarantee and not having a share capital. Registered in England. Company No. 01704872. Registered address: 37 Warren Street, London W1T 6A. Trustees: S Hoare, H Rozga