CFS entry and exit measurements of health, treatment statistics, effectiveness of clinics

NHS England did not have the information requested.

Dear NHS England,

NHS improve referred my request for information on treatment outcomes for people with chronic fatigue syndrome to NHS England.

CFS clinics - treatment statistics

Part One - entry to the clinic
1- Types of physiological data measured on entry to the clinic.
2- Measures used to objectively determine physical functional capacity on
entry to the clinic.
3- Questionaires on symptom load and impact used on entry to the clinic -
e.g. De Paul Questionaire , other specific CFS questionaires and general questionaires eg SF36.
.

Part Two
Changes in health on exit from clinic compared to entry:
1- Physical functional capacity- objective.
2- Physical functional capacity- perceived/subjective.
3- Cognitive functional capacity- objective
4- Cognitive functional capacity- perceived/subjective.
5- Exercise intolerance.
6- Emotional resilience.
7- Orthostatic intolerance – postural orthostatic tachycardia
syndrome POTS,
8- Heart rate response to exertion.
9- Temperature response to exertion.
10- Sleep patterns.
11- Food intolerances.
12- Chemical intolerances.
13- General health.

Part 3
1/ Definition used to indicate that the disease is stable and under
control.
2/- Definition of recovery.

3/Analyses of effectiveness of NHS clinics in treating CFS.
i) Stabilisation rates.
ii) Recovery rates.
ii) health on entry to health on exit,
iv)and duration of time at the clinic.

4/ Percentage of patient returning to work.

5/Percentage of patient returning to pre illness activities.

6/ Length of time patient attends the clinic.

7/ Inter clinic variation in effectiveness.

8/ Best practice management at the best clinics.

9/ Analyses comparing patients health on entry to health on exit,
and duration of time at the clinic or similar.

Yours faithfully,

Freda Frogget

FOI, England (NHS ENGLAND), NHS England

Dear Ms Frogget,

 

Thank you for your communication dated 20 December 2016.

 

NHS England has assessed your communication as a request under the Freedom
of Information (FOI) Act 2000. As such, please be assured that your
request is being dealt with under the terms of the FOI Act and will be
answered within twenty working days.

 

For further information regarding the FOI Act, please refer to the
Information Commissioner’s Office (ICO) website. For further information
regarding NHS England and the information it publishes please visit our
website here.

 

If you have any queries about this request or wish to contact us again,
please email [1][NHS England request email] and the message will be
forwarded appropriately. Please remember to quote the above reference
number in any future communications.

 

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows:- PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [2][NHS England request email].

 

Yours sincerely,

 

Freedom of Information

Corporate Communications Team

Transformation and Corporate Operations Directorate

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Tel: 0300 311 22 33

Email: [3][NHS England request email]

 

‘High quality care for all, now and for future generations’

 

 

 

show quoted sections

References

Visible links
1. mailto:[NHS England request email]
2. mailto:[NHS England request email]
3. mailto:[NHS England request email]

FOI, England (NHS ENGLAND), NHS England

Dear Ms Frogget,

 

Re:     Freedom of Information request (Our Ref: FOI-051928)

 

Thank you for your Freedom of Information (FOI) request dated 20 December
2016.

 

Your exact request was:

 

“CFS clinics - treatment statistics

 

Part One - entry to the clinic

1- Types of physiological data measured on entry to the clinic.

2- Measures used to objectively determine physical functional capacity on
entry to the clinic.

3- Questionaires on symptom load and impact used on entry to the clinic -
e.g. De Paul Questionaire , other specific CFS questionaires and general
questionaires eg SF36.

 

Part Two

Changes in health on exit from clinic compared to entry:

1-      Physical functional capacity- objective.

2-      Physical functional capacity- perceived/subjective.

3-      Cognitive functional capacity- objective

4-      Cognitive functional capacity- perceived/subjective.

5-      Exercise intolerance.

6-      Emotional resilience.

7-      Orthostatic intolerance – postural orthostatic tachycardia
syndrome POTS,

8-      Heart rate response to exertion.

9-      Temperature response to exertion.

10-     Sleep patterns.

11-     Food intolerances.

12-     Chemical intolerances.

13-     General health.

 

Part 3

1/ Definition used to indicate that the disease is stable and under
control.

2/-Definition of recovery.

 

3/Analyses of effectiveness of NHS clinics in treating CFS.

i) Stabilisation rates.

ii) Recovery rates.

ii) health on entry to health on exit,

iv)and duration of time at the clinic.

 

4/ Percentage of patient returning to work.

 

5/Percentage of patient  returning to pre illness activities.

 

6/ Length of time patient attends the clinic.

 

7/ Inter clinic variation in effectiveness.

 

8/ Best practice management at the best clinics.

 

9/ Analyses comparing patients health on entry to health on exit, and
duration of time at the clinic or similar.”

 

NHS England does not hold this information.

 

It may help if we explain that the NHS is not a single organisation but is
made up of a range of organisations such as Hospitals, Clinical
Commissioning Groups (CCGs) and Ambulance Trusts. NHS England is
responsible for commissioning primary care services such as GP and dental
surgeries, as well as some specialised secondary care services. Therefore,
any recorded information NHS England may be able to provide in response to
an FOI request will generally relate to the services NHS England
commissions. For information on commissioned services and the types of
information NHS England holds can be found on our [1]website and
[2]publication scheme. For further information on the NHS, its structure
and other NHS organisations please refer to NHS Choices [3]here.

 

NHS England does not commission Chronic Fatigue Syndrome Clinics. Some
information may be held by individual CCGs. As such, you may wish to
contact individual CCGs directly.

 

You can find CCG contact information on the NHS Choices website:

 

[4]http://www.nhs.uk/ServiceDirectories/Pag...

 

We hope this information is helpful. However, if you are dissatisfied, you
have the right to ask for an internal review by writing to us, within two
months of the date of this letter, to:

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Email: [5][NHS England request email]

 

Please quote the reference number FOI-051928 in any future communications.

 

If you are not content with the outcome of the internal review, you have
the right to apply directly to the Information Commissioner for a
decision. The Information Commissioner’s Office (ICO) can be contacted at:

 

The Information Commissioner’s Office

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

 

Telephone: 0303 123 1113

Email: [6][email address]  

Website: [7]www.ico.gov.uk

 

Please note there is no charge for making an appeal.

 

Please be aware that in line with the Information Commissioner’s directive
on the disclosure of information under the FOI Act, your request will be
anonymised and published on our website as part of our disclosure log.

 

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows:- PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [8][NHS England request email].

   

Yours sincerely,

 

 

Freedom of Information

Corporate Communications Team

Transformation and Corporate Operations Directorate

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Tel: 0300 311 22 33

Email: [9][NHS England request email]

 

 

show quoted sections

References

Visible links
1. http://www.england.nhs.uk/ourwork/
2. https://www.england.nhs.uk/contact-us/pu...
3. http://www.nhs.uk/NHSEngland/thenhs/abou...
4. http://www.nhs.uk/ServiceDirectories/Pag...
5. mailto:[NHS England request email]
6. mailto:[email address]
7. http://www.ico.gov.uk/
8. mailto:[NHS England request email]
9. mailto:[NHS England request email]

Dear FOI, England (NHS ENGLAND),

In 2013 there were 49 English NHS specialist CFS/ME adult services in England, in 2013.
http://bmjopen.bmj.com/content/4/6/e0050...

I am seeking information on the effectiveness of these clinics, at improving the quality of life for people with CFS/ME.

Yours sincerely,

Freda Frogget

FOI-051928

FOI, England (NHS ENGLAND), NHS England

Dear Ms Frogget,

 

Our reference: Freedom of Information request (FOI:051928)

 

Thank you for your email dated 14 January 2017. 

 

Your comments were:

 

“Subject: Internal review of Freedom of Information request - CFS entry
and exit measurements of health, treatment statistics, effectiveness of
clinics

Dear FOI, England (NHS ENGLAND),  

In 2013 there were 49 English NHS specialist CFS/ME adult services in
England, in 2013.

[1]http://bmjopen.bmj.com/content/4/6/e0050...

I am seeking information on the effectiveness of these clinics, at
improving the quality of life for people with CFS/ME.”

 

However, we are unable to begin dealing with your communication without
further clarification.

 

We would be grateful if you would clarify the following:

 

·       Is this a request for further information based on our response to
the original request (FOI-051928)? If so please confirm exactly what
recorded information you are requesting, however, please note the
information provided in our response which confirms that these services
are not commissioned by NHS England. or

·       Is this a formal request for an Internal Review, regarding our
response to FOI-051928? If so please confirm exactly what aspects of the
response you wish to be reviewed.

 

We look forward to hearing from you in relation to the above confirmation

Kind regards,

Freedom of Information

Corporate Communications Team

Patients and Information Directorate

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Tel: 0300 311 22 33

Email: [2][NHS England request email]

 

show quoted sections

References

Visible links
1. http://bmjopen.bmj.com/content/4/6/e0050...
2. mailto:[NHS England request email]

Dear FOI, England (NHS ENGLAND),

The NHS funds GET and CBT treatment protocols for CFS at 49 clinics.

The NHS is currently funding research into CBT (FITNET trial Bristol Clinic- Ester Crawley).

NHS England advises that it does not commission clinics that treat CFS. This answer is confusing, who commissions the NHS, CFS clinics?

Who oversees/audits the effective use of NHS money, at NHS CFS clinics?

What is the basis of the NHS decision to fund trials of CBT in children with CFS, if it has no knowledge of the effectiveness of treating patients, with CBT at the NHS clinics it funds?

Is no auditing or accountability required by NHS clinics, by disease type/prevalence ?

Do the 49 NHS clinics, that treat CFS have zero accountability to NHS England, for how the NHS funds are spent?

This is a request for clarification of the NHS England response to my request for information on how the NHS measures/audits the effectiveness of treatment outcomes and hence the monies spent on CFS, at NHS funded clinics.

Yours sincerely,

Freda Frogget

FOI, England (NHS ENGLAND), NHS England

Dear Ms Frogget,

 

Thank you for your communication dated 10 February 2017.

 

NHS England has assessed your communication as a request under the Freedom
of Information (FOI) Act 2000. As such, please be assured that your
request is being dealt with under the terms of the FOI Act and will be
answered within twenty working days.

 

For further information regarding the FOI Act, please refer to the
Information Commissioner’s Office (ICO) website. For further information
regarding NHS England and the information it publishes please visit our
website here.

 

If you have any queries about this request or wish to contact us again,
please email [1][NHS England request email] and the message will be
forwarded appropriately. Please remember to quote the above reference
number in any future communications.

 

Please do not reply to this email. This message has been sent from a
central mailbox. To communicate with NHS England regarding Freedom of
Information (FOI) requests, enquiries or complaints we ask these are sent
directly to NHS England’s customer contact centre. This is to ensure all
communications are progressed correctly. Their postal address, telephone
number and email details are as follows:- PO Box 16738, Redditch, B97 9PT;
0300 3 11 22 33, [2][NHS England request email].

 

Yours sincerely,

 

Freedom of Information

Corporate Communications Team

Transformation and Corporate Operations Directorate

 

NHS England

PO Box 16738

REDDITCH

B97 9PT

 

Tel: 0300 311 22 33

Email: [3][NHS England request email]

 

‘High quality care for all, now and for future generations’

 

 

 

show quoted sections

References

Visible links
1. mailto:[NHS England request email]
2. mailto:[NHS England request email]
3. mailto:[NHS England request email]

Looking for an EU Authority?

You can request documents directly from EU Institutions at our sister site AskTheEU.org . Find out more .

AskTheEU.org