I am not a Ms and the last paragraph I really object to, which I have addressed in my reply which I address in my next blog.
They say they oversee medical education... Err research forms medical understanding and education?Or am I missing something here?
Dear Ms Rodwell
Thank you for your
correspondence sent via email which was received by the GMC on 9 February 2018,
addressed to Sir Terence Stephenson. Your concern was passed to the Fitness to
Practise section to look at the issues you had raised. We have now reviewed all
of your correspondence, including the original concern from Dr Myhill.
In considering your concern, we
looked at the doctors who were involved in conducting or publishing information
relating to the PACE trial, who hold current registration with the GMC.
After careful consideration, we
have decided that we will not be taking the matter any further at this time.
We’re sorry if this is not the outcome that you were hoping for.
Concerns about staff
involved in the PACE trial who are not registered doctors
There are a number of other
researchers listed as authors of the PACE trial. However, as an organisation
the GMC can’t investigate concerns which do not relate to registered doctors.
Our role
Our role is directly related to
the registration of doctors. Our responsibilities are all connected to keeping
the Medical Register. We oversee medical education; we give entry to the
Register for those suitably qualified; we advise on good medical practice while
registered; and we remove or restrict registration in response to fitness to
practise concerns where there may be a risk to patient safety.
An
investigation can only be opened if the concerns raised are so serious that the
doctor’s fitness to practise medicine is called into question to such an extent
that action may be required to stop or restrict the way in which they can work
to protect future patient safety.
The purpose of an investigation
is to determine if or to what extent we need to restrict the doctor from
working. We are not a general complaints body and we have no legal powers to
intervene in or resolve matters for individual patients.
Reasons for our decision
We are aware that many people
have strong views on the PACE trial and concerns about the way the research was
conducted, collated and published. As an organisation we don’t have any
involvement in setting standards and protocols for clinical trials. However, we
do appreciate that there has been significant academic debate about the trial
and its methodology and that a number of criticisms have been made. We have
reviewed an extensive amount of information about the concerns raised, before
making our decision as to whether we can investigate.
In addition to all of the
relevant documentation submitted to the GMC raising concerns about this
research, we are also aware that there was a Parliamentary debate held on 21
June 2018 which discussed the matter of treatment and research relating to
myalgic encephalomyelitis, in the UK.
Our considered view is that
these concerns are part of an ongoing academic and scientific debate, rather
than matters which would raise concerns about an individual doctor’s fitness to
practice, in the absence of anything which demonstrates that they had acted
dishonestly or with intent to be misleading. From the information provided, we
haven’t identified any issues that would meet these criteria. As an
organisation, we wouldn’t be in a position to comment on the research framework
of the trial, and whether this was fair and robust, as this is outside our
remit.
Whilst we do understand why you
have significant concerns about this research and the impact it has had,
overall, we are not of the view that this would require us to open an
investigation with a view to restricting the medical registration of any of the
doctors involved in carrying out this research.
Concerns about the standard
of care provided
In your correspondence you have
said that you are the mother of a 12 year old child, who has had ME since the
age of 8. You have said that you were not given sufficient information by your
son’s GP to allow you to consider the various treatment options available and
you are concerned that appropriate investigations for your son were not always
followed up. You have advised that your son also experienced severe headaches
amongst other symptoms, however, you consider that the possibility of him
experiencing migraines was not then discussed and investigated fully. You have
advised that your concerns about his treatment were often dismissed, and you
were made to feel irresponsible for wanting to discuss his treatment in detail.
You have said that your son was
sent to a multidisciplinary team and advised to have CBT and GET. However,
after having this treatment you found that his condition declined further.
However, when you tried to raise your concerns about these matters and in
relation to the issue of Post Exertional Neuro-immune Exhaustion (PEME), you
said your views were dismissed even though his symptoms had become worse. You
have also raised concerns about the delay involved in diagnosing your son as
having coeliac disease. We can see that you have also found that you were not
given sufficient support to help manage his pain and discomfort.
We’re sorry to hear of the
difficulties you and your family have experienced. We appreciate that many ME
and CFS patients might have had a negative experience in the NHS, and that they
have concerns about the way their condition is diagnosed and managed. We don’t
wish to undermine these concerns in any way, however we’re not able to look at
the overall care a patient has received, only the issues raised about specific
doctors. In addition, we can’t investigate concerns about the availability of
funding or services available from the NHS. It’s useful to remember that we can
only open an investigation where we’ve decided that we may need to place some
kind of restriction on the doctor’s practice. We don’t have any powers to
intervene in a particular patient’s care, or recommend a particular treatment
or that a referral should be provided to a patient.
We do expect doctors to be
respectful to patients and their families at all times. Whilst we’re sorry to
hear about the attitude of some of the staff involved in your son’s medical
care, issues such as you have described would not usually be a matter for the
GMC to investigate as a medical regulator. However, you can of course complain
about these matters to the relevant healthcare provider, if you’ve not already
done so, to allow any concerns to be addressed at a local level.
We‘re aware there is a broad
spectrum of opinion both among patients and doctors as to the correct method of
diagnosis for people experiencing ME/CFS, and the way the condition should be
managed. We also know that patients are individuals and respond differently to
treatments, and as a result there is no single way of managing ME/CFS which
will work for everyone. As an organisation we’re not able to get involved in
endorsing or recommending particular methods of treatment, or endorsing
particular theories or research about the illness, as this is not part of our
statutory role.
We understand that there are
concerns about the validity and quality of the guidance relating to patients
who have ME/CFS which is used by other organisations such as the NHS and NICE,
as well as non-health care bodies, like the Department for Work and Pensions
and various insurance companies. We don’t have any role in regulating social
security policies, and aren’t able to intervene to tell other organisations to
amend any current guidance documents which they use. You might wish to raise
any concerns you have with the relevant body.
If you feel that any GPs or
consultants have failed to treat your son on specific occasions then this
should be raised with their employers at the GP practice, NHS England or with
the relevant hospital trust directly in the first instance. Local organisations
are usually better placed to look into these types of issues and can provide
explanations and offer apologies if this is appropriate.Thank you for bringing
these matters to our attention. We hope this explains the reasons for our
decision and the kind of issues we are able to look at. We’re sorry we cannot
help you further at this time.
Yours sincerely
Ian McCann
Complaints and
Correspondence Officer
On behalf of the Assistant
Registrar
Fitness to Practise
Directorate
Direct Dial: 0161 923 6344
Email: fpddecisions@gmc-uk.org
No comments:
Post a Comment