Funding requests for diagnosis / treatment of ME/CFS

Dear Mr Oakley

Freedom of Information Enquiry

Thank you for your recent enquiry under the Freedom of Information Act. I
appreciate that we responded one day later then usual, please accept our
apologies.

Requesters Question:

Could you please provide me with the following information relating to
applications to NHS Bedfordshire from Bedfordshire GP's for out of area
funding for the diagnosis and treatment of patients suspected of and or
already diagnosed with Myalgic Encephalopathy / Chronic Fatigue Syndrome /
Post Viral Fatigue Syndrome since September 23rd 1998?

     1.The number of applications for funding for a diagnosis together

     with the hospitals names to carry out the diagnosis.

     2.The number of applications for funding for treatment together

     with the hospitals names to carry out the treatment.

     3.The monetary value of each of the above applications.

     4.The dates of each of the above applications.

     5.The success of each of the above applications.

     6.Whether the application was a repeat application for a
diagnosis

     and or treatment funding for the patient.

Could you also please provide me with all information you have in relation
to guidelines and criteria used in deciding whether the application will
be accepted.

Could you please also provide me with information as to who sits on the
panel that decides whether funding is provided.

Could you also please provide me with any statistics you have that cover
the diagnosis and or treatment of patients with Myalgic Encephalopathy /
Chronic Fatigue Syndrome / Post Viral Fatigue Syndrome where a funding
application was not required and or carried out and where the diagnosis
and or treatment was carried out IN Bedfordshire?

Could you also please provide me with any statistics you have that cover
the diagnosis and or treatment of patients with Myalgic Encephalopathy /
Chronic Fatigue Syndrome / Post Viral Fatigue Syndrome where a funding
application was not required and or carried out and where the diagnosis
and or treatment was carried out OUTSIDE Bedfordshire?

Could you also please advise for each of the patient cases for which you
are to provide me with information with whether or not NICE Guideline 53
was adhered to?

Response:

Please note that we were established as a Primary Care Trust (PCT) on 1^st
October 2006. (We are now known as NHS Bedfordshire.) Therefore, we are
only able to provide you with data from October 2006.  Financial
information has been provided where it is available.

NHS Bedfordshire does not routinely fund referrals to secondary care
hospitals for a diagnosis of CFS/ME, only to exclude other possible
conditions. We would only consider funding a referral to a specialist
CFS/ME centre for patients with exceptional clinical circumstances, as per
NHS Bedfordshire's Individual Treatments Policy.  We have enclosed a copy
of the Individual Treatments Policy for your information. (For
information, this is currently being updated, and a revised version of
this policy will be available on the NHS Bedfordshire website in the near
future.)

Each application for individual funding is reviewed as per the Individual
Treatments Policy, i.e. by a Case Review Panel comprising a Commissioning
Clinician, Senior Commissioning Manager, Public Health Specialist,
Pharmaceutical Advisor and Individual Case Co-ordinator. 

In order for individual funding to be agreed there must be some unusual or
unique clinical factor about the patient that suggests that they are:

o Significantly different to the general population of patients
with the same condition in question
o Likely to gain significantly more benefit from the
intervention than might be expected from the average patient
with the same condition.

The figures relating to the applications for individual funding requests
for CFS/ME diagnosis and/or treatment received by NHS Bedfordshire/
Bedfordshire PCT since October 2006 are shown below:

+------------------------------------------------------------------------+
| | Hospital | Request for | Outcome of | Date | Cost |
| | | Assessment/ | Funding | | |
| | | Treatment | Decision | | |
|---+-----------------+----------------+--------------+-------+----------|
|1. |Harold Wood (now |Assessment only |Approved |2006/07|Unknown |
| |known as Queens | | | | |
| |Hospital) or | | | | |
| |Burrswood | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|2. |National ME |Assessment, and |Approved |2006/07|Unknown |
| |Centre & Harold |further request |assessment but| | |
| |Wood |made for |declined | | |
| | |inpatient |funding for | | |
| | |treatment |inpatient | | |
| | | |treatment | | |
|---+-----------------+----------------+--------------+-------+----------|
|3. |St Barts |Assessment only |Approved |2007/08|£319.18 |
|---+-----------------+----------------+--------------+-------+----------|
|4. |St Barts |Assessment only |Approved |2007/08|£319.18 |
|---+-----------------+----------------+--------------+-------+----------|
|5. |St Barts |Assessment only |Approved |2007/08|£319.18 |
|---+-----------------+----------------+--------------+-------+----------|
|6. |St Barts |Assessment only |Approved |2007/08|£319.18 |
|---+-----------------+----------------+--------------+-------+----------|
|7. |St Barts |Assessment only |Approved |2007/08|£319.18 |
|---+-----------------+----------------+--------------+-------+----------|
|8. |Cambridge & |Assessment only |Approved |2007/08|Unknown |
| |Peterborough | | | | |
| |Adult CFS Service| | | | |
|---+-----------------+----------------+--------------+-------+----------|
|9. |Royal Free |Assessment only |Approved |2007/08|Unknown |
|---+-----------------+----------------+--------------+-------+----------|
|10.|Queens Hospital, |Treatment |Approved |2007/08|£500 |
| |Romford | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|11.|Queens Hospital, |Treatment |Approved |2007/08|Unknown |
| |Romford | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|12.|Queens Hospital, |Treatment |Approved |2007/08|£500 |
| |Romford | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|13.|Queens Hospital, |Treatment |Approved |2007/08|£820 |
| |Romford | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|14.|Queens Hospital, |Treatment |Approved |2007/08|£40,356 |
| |Romford | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|15.|Queens Hospital, |Outpatient |Approved |2007/08|£206 |
| |Romford |treatment | | | |
| | |(request for | | | |
| | |inpatient | | | |
| | |treatment | | | |
| | |declined) | | | |
|---+-----------------+----------------+--------------+-------+----------|
|16.|Queens Hospital, |Treatment |Declined |2007/08|Unknown |
| |Romford | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|17.|Bedford Hospital |Use of Ozone |Declined |2007/08|Unknown |
| | |alternative | | | |
| | |therapy | | | |
|---+-----------------+----------------+--------------+-------+----------|
|18.|St Barts (repeat |Assessment |Approved |2007/08|£390.18 |
| |application for | | | | |
| |patient shown in | | | | |
| |17 above) | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|19.|St Barts (repeat |Further |Declined |2007/08|£3,191.76|
| |application for |treatment | | | |
| |patient shown in | | | | |
| |17 and18 above) | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|20.|Royal Homeopathic|Use of |Declined |2007/08|Unknown |
| |Hospital |alternative | | | |
| | |therapy | | | |
|---+-----------------+----------------+--------------+-------+----------|
|21.|Royal National |Treatment |Approved |2007/08|£1,700 |
| |Hospital for | | | | |
| |Rheumatic | | | | |
| |Diseases | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|22.|National ME |Treatment |Approved |2007/08|Unknown |
| |Centre | | | | |
| |Disablement | | | | |
| |Service (Queens) | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|23.|Royal Homeopathic|Treatment |Declined |2007/08|Unknown |
| |Hospital | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|24.|Queens Hospital, |Treatment |Approved |2007/08|£680 |
| |Romford (repeat | | | | |
| |application for | | | | |
| |patient shown in | | | | |
| |23 above) | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|25.|Ida Darwin |Assessment only |Approved |2008/09|£447 |
|---+-----------------+----------------+--------------+-------+----------|
|26.|Queens Hospital, |Assessment & |Approved |2008/09|£60,000 |
| |Romford |treatment | | |approx, |
| | | | | |ongoing |
|---+-----------------+----------------+--------------+-------+----------|
|27.|Queens Hospital, |Assessment & |Approved |2008/09|£220 |
| |Romford |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|28.|Queens Hospital, |Assessment & |Approved |2008/09|£1,130 |
| |Romford |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|29.|Queens Hospital, |Assessment & |Approved |2008/09|£780 |
| |Romford |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|30.|Queens Hospital, |Assessment & |Approved |2008/09|£680 |
| |Romford |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|31.|Royal London |Assessment |Declined |2008/09|Unknown |
| |Homeopathic | | | | |
| |Hospital | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|32.|South London and |Assessment & |Approved |2008/09|£809 |
| |Maudsley |outpatient | | | |
| | |pacing treatment| | | |
|---+-----------------+----------------+--------------+-------+----------|
|33.|St Barts |Assessment & |Approved |2008/09|£3,120 |
| | |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|34.|The Breakspeare |Assessment |Declined |2008/09|Unknown |
| |Hospital | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|35.|The Breakspeare |Assessment |Declined |2009/10|Unknown |
| |Hospital | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|36.|Queens Hospital, |Assessment & |Approved |2009/10|£680 |
| |Romford |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|37.|Queens Hospital, |Assessment & |Approved |2009/10|£680 |
| |Romford |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|38.|South London and |Assessment |Approved |2009/10|£791 |
| |Maudsley | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|39.|South London and |Assessment |Declined |2009/10|£857 |
| |Maudsley | | | | |
|---+-----------------+----------------+--------------+-------+----------|
|40.|St Barts |Assessment & |Approved |2009/10|£4,228 |
| | |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|41.|St Barts |Assessment & |Approved |2009/10|£4,228 |
| | |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|42.|St Barts |Assessment & |Approved |2009/10|£4,228 |
| | |treatment | | | |
|---+-----------------+----------------+--------------+-------+----------|
|43.|St Barts |Assessment & |Currently |2009/10|£4,228 |
| | |treatment |being | | |
| | | |processed | | |
+------------------------------------------------------------------------+

For all of these cases, the Case Review Panel was aware of NICE Guideline
53 and referred to it where appropriate, as part of the Panel's assessment
of whether the proposed intervention for each patient was likely to be
clinically effective and cost effective.

 NHS Bedfordshire does not have any statistics that cover the diagnosis
and or treatment of patients with Myalgic Encephalopathy / Chronic Fatigue
Syndrome / Post Viral Fatigue Syndrome where a funding application was not
required and/or carried out.  For the majority of patients, the patient's
GP makes a diagnosis of chronic fatigue syndrome/myalgic encephalomyelitis
and the patient's GP is responsible for coordinating the treatment for the
patient. NHS Bedfordshire does not routinely receive information from
local GPs about the number of patients diagnosed with and treated for
Chronic Fatigue Syndrome / Myalgic Encephalopathy.

   

Please note that this response has been provided within the 20 working day
timeframe as stipulated in the Act.

NHS Bedfordshire does not allow information gained under the Act to be
reused in a raw or analysed state.

If you disagree with our decision or are otherwise dissatisfied with how
we have dealt with your request in the first instance you may approach our
Information Governance Records Coordinator in writing:

Tania Do Carmo e Souza

Gilbert Hitchcock House

21 Kimbolton Road

Bedford

MK40 2AW

Should you remain dissatisfied with the outcome you have a right under s50
of the Freedom of Information Act to appeal against the decision by
contacting:

Information Commissioner

Wycliffe House

Water Lane

Wilmslow

SK9 5AF

Any future correspondence you may have with Bedfordshire NHS in relation
to this matter should be marked private and confidential and sent to me.

Yours sincerely

Tania Do Carmo e Souza

Information Governance Records Coordinator

Bedfordshire NHS

Gilbert Hitchcock House

Kimbolton Road 21

MK40 2AW

Tel: 01234 795714 ext 3973

[mobile number]