CFS - clinical exercise assessments and objective outcomes at NHS clinics

NHS Digital did not have the information requested.

Dear NHS Digital,

I seek information on the changes in the physical health of Chronic Fatigue Syndrome (CFS) patients, as a result of attending the CFS, clinic between 2007-2017, including but not limited to each of the following parameters.

Physical functional capacity - objective changes
i) two day CPET test
ii) 6 minute walk test
iii) Up and go Test
iv) Oxygen uptake while walking
v) resting heart rate
vi) heart rate variability
vii) activity as per actigraph
viii) activity as per pedometer
ix) ataxia
x) daily temperature
Physical functional capacity - subjective changes
i) return to school/work part-time
ii) return to school/work full-time
ii) change in hobbies/sports
Physiological changes
i) anaerobic threshold
ii) chrontropic incompetence
ii) diabetes insipidus
iv) orthostatic intolerance

(NHS Digital (formerly the Health and Social Care Information Centre) who are the national provider of information, data and IT systems for health and social care).

Yours faithfully,

Robin Ellis

HSCIC Enquiries,

 

Ref: NIC-105416-N7C9M 

Dear Robin Ellis,

I am writing to acknowledge that your request for information was received
by NHS Digital on 13/04/17 and is currently being considered.

If NHS Digital is able to provide you with the information you have
requested, then under the Freedom of Information (FOI) Act you are
entitled to receive it promptly and in any event no later than the 20th
working day following the date of receipt. However, we may need to contact
you to clarify your request. If this is required we aim to do this
promptly but no later than 7 days after receiving your initial request for
information.

May I take this opportunity to explain the FOI Act in more detail? The Act
provides a 'General right of access to information held by public
authorities'. However, it also defines a number of exemptions which may
prevent the release of some or all of the information you have requested.
Therefore, NHS Digital will assess your information request in light of
any relevant exemptions.

If exemptions do apply, then NHS Digital may decide not to release all, or
part, of the information you have requested. I shall inform you if this is
the case, and advise you of your rights of appeal.

If the information you request contains reference to a third party then
they may be consulted prior to a decision being taken as to whether to
release the information to you.

The response to your request will be sent to you by email, however if you
require your response in any other format, please contact us to discuss a
suitable format.

NHS Digital will not normally charge a fee to provide you with the
information you have requested, unless the cost of dealing with your
request is more than £450 as outlined in Section 12 of the FOI Act and
Section 3 of the The FOI and Data Protection (Appropriate Limit and Fees)
Regulations 2004. If it appears likely that your request will cost more,
then NHS Digital is able to refuse to supply the information.  As per our
obligations under Section 16 of the FOI Act, every effort will be made to
provide you with details of how you may be able to reframe your request in
order for us to complete the required work within the (£450 / 18 person
hours) cost limit.

If you have any queries or should you wish to make a complaint about the
manner in which your request is being processed then please do not
hesitate to contact me at the above address in the first instance. Any
complaints will be investigated in accordance with NHS Digital's
complaints procedure.

Further information about your rights under the Freedom of Information
Act, is available from the Information Commissioner's Office, Wilmslow,
Cheshire and on the NHS Digital website.

Kind Regards,

Contact Centre Team
NHS Digital
[1]www.digital.nhs.uk

0300 303 5678
[2][email address]

1 Trevelyan Square | Boar Lane | Leeds | LS1 6AE

NHS Digital provides information and technology for better health and
care. Find out more about who we are and what we do
at [3]www.digital.nhs.uk

NHS Digital Customer Service Contact Centre in Leeds, has been awarded
Customer Service Excellence Standard Certification, In accordance with the
requirements of the Cabinet Offices Customer Service Excellence Standard

show quoted sections

HSCIC Enquiries,

1 Attachment

Ref: NIC-105416-N7C9M 

Dear Robin Ellis,

Many thanks for your recent request to NHS Digital.

We have now received a reply to this from our colleagues in the
Information Governance team.

Please see the attached file(s).

Kind Regards,

Contact Centre Team
NHS Digital
[1]www.digital.nhs.uk

0300 303 5678

[2][email address]

1 Trevelyan Square | Boar Lane | Leeds | LS1 6AE

HSCIC now operate under the new trading name of NHS Digital – clarifying
our role as the national information and technology partner for the health
and care system.

NHS Digital Customer Service Contact Centre in Leeds, has been awarded
Customer Service Excellence Standard Certification, In accordance with the
requirements of the Cabinet Offices Customer Service Excellence Standard

show quoted sections

Dear HSCIC Enquiries,

Could you please provide me with a list of CFS clinics. I seem to be getting 100% run around trying to get any information on the outcomes at CFS clinics and am struggling to find out where the clinics are.

Yours sincerely,

Robin Ellis

HSCIC Enquiries,

 

Ref: NIC-110877-B3L0L 

Dear Robin Ellis,

I am writing to acknowledge that your request for information was received
by NHS Digital on 10/05/2017 and is currently being considered.

If NHS Digital is able to provide you with the information you have
requested, then under the Freedom of Information (FOI) Act you are
entitled to receive it promptly and in any event no later than the 20th
working day following the date of receipt. However, we may need to contact
you to clarify your request. If this is required we aim to do this
promptly but no later than 7 days after receiving your initial request for
information.

May I take this opportunity to explain the FOI Act in more detail? The Act
provides a 'General right of access to information held by public
authorities'. However, it also defines a number of exemptions which may
prevent the release of some or all of the information you have requested.
Therefore, NHS Digital will assess your information request in light of
any relevant exemptions.

If exemptions do apply, then NHS Digital may decide not to release all, or
part, of the information you have requested. I shall inform you if this is
the case, and advise you of your rights of appeal.

If the information you request contains reference to a third party then
they may be consulted prior to a decision being taken as to whether to
release the information to you.

The response to your request will be sent to you by email, however if you
require your response in any other format, please contact us to discuss a
suitable format.

NHS Digital will not normally charge a fee to provide you with the
information you have requested, unless the cost of dealing with your
request is more than £450 as outlined in Section 12 of the FOI Act and
Section 3 of the The FOI and Data Protection (Appropriate Limit and Fees)
Regulations 2004. If it appears likely that your request will cost more,
then NHS Digital is able to refuse to supply the information.  As per our
obligations under Section 16 of the FOI Act, every effort will be made to
provide you with details of how you may be able to reframe your request in
order for us to complete the required work within the (£450 / 18 person
hours) cost limit.

If you have any queries or should you wish to make a complaint about the
manner in which your request is being processed then please do not
hesitate to contact us at [1][email address] in the first instance. Any
complaints will be investigated in accordance with NHS Digital's
complaints procedure.

Further information about your rights under the Freedom of Information
Act, is available from the Information Commissioner's Office, Wilmslow,
Cheshire and on the NHS Digital website.

Kind Regards,

Contact Centre Team
NHS Digital
[2]www.digital.nhs.uk

0300 303 5678
[3][email address]

1 Trevelyan Square | Boar Lane | Leeds | LS1 6AE

NHS Digital provides information and technology for better health and
care. Find out more about who we are and what we do
at [4]www.digital.nhs.uk

NHS Digital Customer Service Contact Centre in Leeds, has been awarded
Customer Service Excellence Standard Certification, In accordance with the
requirements of the Cabinet Offices Customer Service Excellence Standard

show quoted sections

Dear HSCIC Enquiries,

I am still waiting for the information requested that was required by law to be provided promptly and at least within 20 days.

Yours sincerely,

Robin Ellis

HSCIC Enquiries,

Ref: NIC-110877-B3L0L

Dear Robin,

Thank you for your email.

Our Information Governance Team, has confirmed the deadline for this
request is 08/06/2017 and as such they will respond before the statutory
deadline.

Kind Regards,

Nailah Kauser 

Contact Centre Team
NHS Digital
[1]www.digital.nhs.uk

0300 303 5678
[2][email address]

1 Trevelyan Square | Boar Lane | Leeds | LS1 6AE

You can find out more about our service, including our response times and
customer charter on the NHS Digital website:
[3]https://www.digital.nhs.uk/contact-us/cu...

NHS Digital Customer Service Contact Centre in Leeds, has been awarded
Customer Service Excellence Standard Certification, In accordance with the
requirements of the Cabinet Offices Customer Service Excellence Standard

show quoted sections

Dear HSCIC Enquiries,

Further to my request, I thought it might be of assistance to advise you that the Royal Free London NHS Trust has advised that it doesn't carry out any physiological and/or physical functional capacity/clinical exercise assessments at its clinics. Nor does it use the DePaul Questionaire, or similar that have been designed specifically for people with the neurological disease chronic fatigue syndrome.

The following "mental health" subjective surveys are used when chronic fatigue syndrome patients enter the clinic, sometimes the clinic collects data on exit, but it does not collate the results/outcomes.

CFS – Chalder Fatigue Scale (0-33; 33=high fatigue)
SF-36 (0-100; 100=high physical functioning)
VAS - Visual Analogue Scale (0-100; 100=high pain)
HADS ANXIETY (0-21; 21=high anxiety)
HADS DEPRESSION (0-21; 21=high depression)
SES – Self Efficacy Scale (0-60; 60=high confidence); EQ 5D (5-15; 15=higher quality of life)
ESS – Epworth Sleepiness Scale (0-24; 24=high chance of sleeping)
CGI – Clinical Global Improvement (1-7; 1=very much better, 4=no change & 7=very much worse)

It is useful to know whether or not the above data is collected.

However, type of physical/physiological data, I am interested in, is the objective measures/changes in physiology and physical functional capacity, that are commonly used at exercise clinics for other chronic diseases.

VO2 max
Resting heart rate
Heart rate variability
Heart rate abnormalities on exertion
6 minute walking test
2 minute waking test
Orthostatic intolerance (NASA lean test)
Balance - ataxia - rhomberg test

Yours sincerely,

Robin Ellis

HSCIC Enquiries,

 

Ref: NIC-115016-K6X0M 

Dear Robin Ellis,

I am writing to acknowledge that your request for information was received
by NHS Digital on 24/05/2017 and is currently being considered.

We have created a new case number for this new question you have raised in
your email below and this will be dealt with as a separate request.

If NHS Digital is able to provide you with the information you have
requested, then under the Freedom of Information (FOI) Act you are
entitled to receive it promptly and in any event no later than the 20th
working day following the date of receipt. However, we may need to contact
you to clarify your request. If this is required we aim to do this
promptly but no later than 7 days after receiving your initial request for
information.

May I take this opportunity to explain the FOI Act in more detail? The Act
provides a 'General right of access to information held by public
authorities'. However, it also defines a number of exemptions which may
prevent the release of some or all of the information you have requested.
Therefore, NHS Digital will assess your information request in light of
any relevant exemptions.

If exemptions do apply, then NHS Digital may decide not to release all, or
part, of the information you have requested. I shall inform you if this is
the case, and advise you of your rights of appeal.

If the information you request contains reference to a third party then
they may be consulted prior to a decision being taken as to whether to
release the information to you.

The response to your request will be sent to you by email, however if you
require your response in any other format, please contact us to discuss a
suitable format.

NHS Digital will not normally charge a fee to provide you with the
information you have requested, unless the cost of dealing with your
request is more than £450 as outlined in Section 12 of the FOI Act and
Section 3 of the The FOI and Data Protection (Appropriate Limit and Fees)
Regulations 2004. If it appears likely that your request will cost more,
then NHS Digital is able to refuse to supply the information.  As per our
obligations under Section 16 of the FOI Act, every effort will be made to
provide you with details of how you may be able to reframe your request in
order for us to complete the required work within the (£450 / 18 person
hours) cost limit.

If you have any queries or should you wish to make a complaint about the
manner in which your request is being processed then please do not
hesitate to contact us at [1][email address] in the first instance. Any
complaints will be investigated in accordance with NHS Digital's
complaints procedure.

Further information about your rights under the Freedom of Information
Act, is available from the Information Commissioner's Office, Wilmslow,
Cheshire and on the NHS Digital website.

Kind Regards,

Contact Centre Team
NHS Digital
[2]www.digital.nhs.uk

0300 303 5678
[3][email address]

1 Trevelyan Square | Boar Lane | Leeds | LS1 6AE

NHS Digital provides information and technology for better health and
care. Find out more about who we are and what we do
at [4]www.digital.nhs.uk

NHS Digital Customer Service Contact Centre in Leeds, has been awarded
Customer Service Excellence Standard Certification, In accordance with the
requirements of the Cabinet Offices Customer Service Excellence Standard

show quoted sections

HSCIC Enquiries,

2 Attachments

  • Attachment

    NIC 110877 B3L0L Final response.pdf

    294K Download View as HTML

  • This attachment has been hidden. There are various reasons why we might have done this, sorry we can't be more specific here. Please contact us if you have any questions.

Ref: NIC-110877-B3L0L 

Dear Robin Ellis,

Many thanks for your recent request to NHS Digital.

We have now received a reply to this from our colleagues in the
Information Governance team.

Please see the attached files.

Kind Regards,

Contact Centre Team
NHS Digital
[1]www.digital.nhs.uk

0300 303 5678

[2][email address]

1 Trevelyan Square | Boar Lane | Leeds | LS1 6AE

HSCIC now operate under the new trading name of NHS Digital – clarifying
our role as the national information and technology partner for the health
and care system.

NHS Digital Customer Service Contact Centre in Leeds, has been awarded
Customer Service Excellence Standard Certification, In accordance with the
requirements of the Cabinet Offices Customer Service Excellence Standard

References

Visible links
1. http://www.digital.nhs.uk/
2. mailto:[email%20address]

HSCIC Enquiries,

2 Attachments

Ref: NIC-115016-K6X0M 

Dear Robin Ellis,

Many thanks for your recent request to NHS Digital.

We have now received a reply to this from our colleagues in the
Information Governance team.

Please see the attached file(s).

Kind Regards,

Contact Centre Team
NHS Digital
[1]www.digital.nhs.uk

0300 303 5678

[2][email address]

1 Trevelyan Square | Boar Lane | Leeds | LS1 6AE

HSCIC now operate under the new trading name of NHS Digital – clarifying
our role as the national information and technology partner for the health
and care system.

NHS Digital Customer Service Contact Centre in Leeds, has been awarded
Customer Service Excellence Standard Certification, In accordance with the
requirements of the Cabinet Offices Customer Service Excellence Standard

References

Visible links
1. http://www.digital.nhs.uk/
2. mailto:[email%20address]

Dear HSCIC Enquiries,
I note that NHS Digital has no objective information on the physiological/physical outcomes of "treatment" at NHS clinics.
Yours sincerely,

Robin Ellis