Interventions for non-Sectionable patients with mental illness

C Rock made this Freedom of Information request to National Institute for Health and Clinical Excellence

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The request was successful.

Dear National Institute for Health and Clinical Excellence,

With regard to mental health problems in young adults who have symptoms of Paranoia or Schizophrenia evidently disrupting their lives, but who do not have insight into that illness, and yet who are not deemed Sectionable when assessed:

1 What are the NICE guidelines for engagement and treatment for those persons? I am thinking here especially of those persons who may have fantasies, abnormal fears of identified groups of people, and may be at times ‘hearing voices’, and yet who appear to be able to behave normally during Assessment, such that Sectioning is not first choice of approach.

2 What studies or recommendations have been made concerning that same group of people as in (1) above, with regard to engaging and helping them to accept their illness and hence negotiate treatment of some sort whether through medication or therapies?

3 What are the NICE guidelines for GPs when close relatives e.g. parents, of young adults - again, affected as in (1) above - report to their GP that the illness is taking over that person’s life and severely limiting their well being and ability to work, socialise and rest? Is there an obvious duty, for instance, for the GP to consider this condition and perhaps consult or refer to a specialist in Mental Health Care, bearing in mind that the ill patient is known to the GP to be without insight and yet is not in any way monitored by any healthcare contact?

4 What are the NICE recommendations and the responsibilities for a GP when a person reports the case as in para. (3) above, then reports to the GP that their own problems are linked with the daily stresses of watching the demise of, or coping with, the individual (perhaps a son or daughter) living in the family home? For instance, is any special assessment of the situation or condition indicated or prompted; should not the GP refer for an assessment of Parents or Carers needs (even if they are ‘carers by default’; not having been assigned as such)?

5 What recommendations have been made by NICE for Mental Health specialists to consider, in this same instance, invoking Family Work (e.g. as in the Meriden Family Programme) as a means of working with parents, siblings or carers of the affected person, to try and help engage that person in remedial treatment, and to help those others (the family) manage the day-to-day situations in which they might find themselves; also even to help with reassuring and stabilising the affected person at times when illness attacks?

6 What statistics are available on the numbers of suicides and incidents of self-harming or harming others in those persons ill as in (1) above, who have been diagnosed with a schizophrenic or paranoid illness, but have not been judged Sectionable; who deny prescribed medication, and are not monitored, (i.e. are not assigned to case-workers, key-workers or equivalent contacts in Mental Health Services)?

My interest in the above questions is serious and relevant, and I would appreciate answers relevant and close to the situations I describe. This situation illustrates a specific but known mental health scenario, as described. I suspect there are others who will be interested in this enquiry.

If you consider answers to my specific questions have been given elsewhere, please direct me to that source, or redirect me if you feel this department is not best suited for the answers; but my specific interest is in any national rulings or guidelines which existed to 2007/8 in this matter and, secondarily, changes made in the last 3 years (I am aware of CG82).

Yours faithfully,

C Rock

NICE Mail, National Institute for Health and Clinical Excellence

Dear Mr/Ms Rock

 

Reference No: EH14271

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information, received at this office on 5
October 2011, in which you requested the following:

    

With regard to mental health problems in young adults who have symptoms of
Paranoia or Schizophrenia evidently disrupting their Lives, but who do not
have insight into that illness, and yet who are not deemed Sectionable
when assessed:

    

     1 What are the NICE guidelines for engagement and treatment for those
persons? I am thinking here especially of those persons who may have
fantasies, abnormal fears of identified groups of people, and may be at
times ‘hearing voices’, and yet who appear to be able to behave normally
during Assessment, such that Sectioning is not first choice of approach.

    

     2 What studies or recommendations have been made concerning that same
group of people as in (1) above, with regard to engaging and helping them
to accept their illness and hence negotiate treatment of some sort whether
through medication or therapies?

    

     3 What are the NICE guidelines for GPs when close relatives e.g.
parents, of young adults - again, affected as in (1) above – report to
their GP that the illness is taking over that person’s life and severely
limiting their well being and ability to work, socialise and rest? Is
there an obvious duty, for instance, for the GP to consider this condition
and perhaps consult or refer to a specialist in Mental Health Care,
bearing in mind that the ill patient is known to the GP to be without
insight and yet is not in      any way monitored by any healthcare
contact?

    

     4 What are the NICE recommendations and the responsibilities for a GP
when a person reports the case as in para. (3) above, then reports to the
GP that their own problems are linked with the daily stresses of watching
the demise of, or coping with, the individual (perhaps a son or daughter)
living in the family home? For instance, is any special assessment of the
situation or condition indicated or prompted; should not the GP refer for
an assessment of Parents or Carers needs (even if they are ‘carers by
default’; not having been assigned as such)?

    

     5 What recommendations have been made by NICE for Mental Health
specialists to consider, in this same instance, invoking Family Work (e.g.
as in the Meriden Family Programme) as a means of working with parents,
siblings or carers of the affected person, to try and help engage that
person in remedial treatment, and to help those others (the family) manage
the day-to-day situations in which they might find themselves; also even
to help with reassuring and stabilising the affected person at times when
illness attacks?

    

     6 What statistics are available on the numbers of suicides and
incidents of self-harming or harming others in those persons ill as in (1)
above, who have been diagnosed with a schizophrenic or paranoid illness,
but have not been judged Sectionable; who deny prescribed medication, and
are not monitored, (i.e. are not assigned to case-workers, key-workers or
equivalent contacts in Mental Health Services)?

    

     My interest in the above questions is serious and relevant, and I
would appreciate answers relevant and close to the situations I describe.
This situation illustrates a specific but known mental health scenario, as
described. I suspect there are others who will be interested in this
enquiry.

 

 

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NICE.

 

Should you need to discuss this further please contact the enquiry
handling team on 0845 003 7781.

 

Regards

Janet 

 

Janet Fahie

Communications Executive

National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United
Kingdom
Tel: 44 (0)845 003 7781 | Fax: 44 (0)845 003 7785

Web: [1]http://nice.org.uk

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NICE Mail, National Institute for Health and Clinical Excellence

Dear Sir/Madam

 

FOI enquiry reference EH14271

 

Freedom of Information Act 2000

 

I write in connection with your request for information dated 5 October
2011. Your request for information has been considered with the following
response being issued in compliance with the Act.

 

I have taken each of your questions in turn. In relation to each of the
questions I have interpreted these in the light of your comments that you
are specifically interested in ‘any national rulings or guidelines which
existed to 2007/8 and secondarily changes made in the last 3 years’.

 

1.     What are the NICE guidelines for engagement and treatment for those
persons? I am thinking here especially of those persons who may have
fantasies, abnormal fears of identified groups of people, and may be at
times ‘hearing voices’, and yet who appear to be able to behave normally
during Assessment, such that Sectioning is not first choice of approach.

 

Before 2007/8 NICE guidance on the treatment and management of
schizophrenia was contained within our clinical guideline: CG1
Schizophrenia, core interventions in the treatment and management of
schizophrenia in primary and secondary care. This guideline was published
in December 2002 and represented current NICE guidance on the topic
between December 2002 and  March 2009. In March 2009, as I think you are
aware, NICE published updated guidance. You can find the updated guidance
on our website at: [1]http://guidance.nice.org.uk/CG82.

 

I have attached a copy of CG1 for you which sets out our recommendations
as they were before 2007/8. Please note this document does not constitute
current NICE guidance.

2.     What studies or recommendations have been made concerning that same
group of people as in (1) above, with regard to engaging and helping them
to accept their illness and hence negotiate treatment of some sort whether
through medication or therapies?

Please see recommendations 1.1.3 to 1.1.6 on pages 6-7 of the attached
document, CG1, for details of our recommendations on assessment and the
need to engage with the service user and provide appropriate information
and support. 

3.      What are the NICE guidelines for GPs when close relatives e.g.
parents, of young adults - again, affected as in (1) above – report to
their GP that the illness is taking over that person’s life and severely
limiting their well being and ability to work, socialise and rest? Is
there an obvious duty, for instance, for the GP to consider this condition
and perhaps consult or refer to a specialist in Mental Health Care,
bearing in mind that the ill  patient is known to the GP to be without
insight and yet is not in any way monitored by any healthcare contact?

Please see recommendation 1.2.1 on page 8 of the attached document for our
recommendations in CG1 which state that ‘all people with suspected or
newly diagnosed schizophrenia should be referred urgently to secondary
mental health services for assessment and development of a care plan’

4.      What are the NICE recommendations and the responsibilities for a
GP when a person reports the case as in para. (3) above, then reports to
the GP that their own problems are linked with the daily stresses of
watching the demise of, or coping with, the individual (perhaps a son or
daughter) living in the family home? For instance, is any special
assessment of the situation or condition indicated or prompted; should not
the GP refer for an assessment of Parents or Carers needs (even if they
are ‘carers by default’; not having been assigned as such)?

The recommendations set out in CG1 do not specifically cover the needs of
the parents or carers. However, please see recommendation 1.1.6.2 which
states that ‘families and carers should be offered the opportunity to
participate in family or carer support programmes where they exist.’

5.     What recommendations have been made by NICE for Mental Health 
specialists to consider, in this same instance, invoking Family Work (e.g.
as in the Meriden Family Programme) as a means of working with parents,
siblings or carers of the affected person, to try and help engage that
person in remedial treatment, and to help those others (the family) manage
the day-to-day situations in which they might find themselves; also even
to help with reassuring and stabilising the affected person at times when
illness attacks?

NICE did not make specific recommendations regarding the ‘Meriden Family
Programme’ in CG1. However, please see recommendations 1.4.4.6 to 1.4.4.11
on page 17 of CG1 for more general recommendations regarding family
intervention work.

 

6.  What statistics are available on the numbers of suicides and incidents
of self-harming or harming others in those persons ill as in (1) above,
who have been diagnosed with a schizophrenic or paranoid illness, but have
not been judged Sectionable; who deny prescribed medication, and are not
monitored, (i.e. are not assigned to case-workers, key-workers or
equivalent contacts in Mental Health Services)?

 

This information is not held by NICE, however you may be able to obtain
some data from:

 

·         NHS Information Centre – [2]http://www.ic.nhs.uk/

·         Office for National Statistics -
[3]http://www.statistics.gov.uk/hub/index.h...

 

I hope this information is helpful to you. The response time for your
request on this occasion was 13 working days.

 

If you are unhappy with this response and wish to make a formal complaint
 it must be made in writing by letter, fax or email within 20 working days
of the Institute’s response to you and sent to:

 

Alana Christopher

Associate Director, Corporate Office

National Institute for Health and Clinical Excellence

MidCity Place

71 High Holborn

London WC1V 6NA

Email: [4][email address]

 

Once we have received your complaint, you will be sent an acknowledgement
within two working days. The Associate Director, Corporate Office, will
review your complaint and a full reply will be sent to you within 20
working days.

 

If you are not content with the outcome your complaint, you may apply
directly to the Information Commissioner for a decision who can be
contacted at: The Information Commissioner’s Office, Wycliffe House, Water
Lane, Wilmslow, Cheshire SK9 5AF.

 

Kind regards

Janet 

 

Janet Fahie

Communications Executive

National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United
Kingdom
Tel: 44 (0)845 003 7781 | Fax: 44 (0)845 003 7785

Web: [5]http://nice.org.uk

The information contained in this message and any attachments is intended
for the addressee(s) only. If you are not the addressee, you may not
disclose, reproduce or distribute this message. If you have received this
message in error, please advise the sender and delete it from your system.
Any personal data sent in reply to this message will be used in accordance
with provisions of the Data Protection Act 1998 and only for the purposes
of the Institute's work.

All messages sent by NICE are checked for viruses, but we recommend that
you carry out your own checks on any attachment to this message. We cannot
accept liability for any loss or damage caused by software viruses.

http://www.nice.org.uk

References

Visible links
1. http://guidance.nice.org.uk/CG82
2. http://www.ic.nhs.uk/
3. http://www.statistics.gov.uk/hub/index.h...
4. mailto:[email address]
5. http://nice.org.uk/

NICE Mail, National Institute for Health and Clinical Excellence

1 Attachment

Resent with the attachment

 

Dear Sir/Madam

 

FOI enquiry reference EH14271

 

Freedom of Information Act 2000

 

I write in connection with your request for information dated 5 October
2011. Your request for information has been considered with the following
response being issued in compliance with the Act.

 

I have taken each of your questions in turn. In relation to each of the
questions I have interpreted these in the light of your comments that you
are specifically interested in ‘any national rulings or guidelines which
existed to 2007/8 and secondarily changes made in the last 3 years’.

 

1.     What are the NICE guidelines for engagement and treatment for those
persons? I am thinking here especially of those persons who may have
fantasies, abnormal fears of identified groups of people, and may be at
times ‘hearing voices’, and yet who appear to be able to behave normally
during Assessment, such that Sectioning is not first choice of approach.

 

Before 2007/8 NICE guidance on the treatment and management of
schizophrenia was contained within our clinical guideline: CG1
Schizophrenia, core interventions in the treatment and management of
schizophrenia in primary and secondary care. This guideline was published
in December 2002 and represented current NICE guidance on the topic
between December 2002 and  March 2009. In March 2009, as I think you are
aware, NICE published updated guidance. You can find the updated guidance
on our website at: [1]http://guidance.nice.org.uk/CG82.

 

I have attached a copy of CG1 for you which sets out our recommendations
as they were before 2007/8. Please note this document does not constitute
current NICE guidance.

2.     What studies or recommendations have been made concerning that same
group of people as in (1) above, with regard to engaging and helping them
to accept their illness and hence negotiate treatment of some sort whether
through medication or therapies?

Please see recommendations 1.1.3 to 1.1.6 on pages 6-7 of the attached
document, CG1, for details of our recommendations on assessment and the
need to engage with the service user and provide appropriate information
and support. 

3.      What are the NICE guidelines for GPs when close relatives e.g.
parents, of young adults - again, affected as in (1) above – report to
their GP that the illness is taking over that person’s life and severely
limiting their well being and ability to work, socialise and rest? Is
there an obvious duty, for instance, for the GP to consider this condition
and perhaps consult or refer to a specialist in Mental Health Care,
bearing in mind that the ill  patient is known to the GP to be without
insight and yet is not in any way monitored by any healthcare contact?

Please see recommendation 1.2.1 on page 8 of the attached document for our
recommendations in CG1 which state that ‘all people with suspected or
newly diagnosed schizophrenia should be referred urgently to secondary
mental health services for assessment and development of a care plan’

4.      What are the NICE recommendations and the responsibilities for a
GP when a person reports the case as in para. (3) above, then reports to
the GP that their own problems are linked with the daily stresses of
watching the demise of, or coping with, the individual (perhaps a son or
daughter) living in the family home? For instance, is any special
assessment of the situation or condition indicated or prompted; should not
the GP refer for an assessment of Parents or Carers needs (even if they
are ‘carers by default’; not having been assigned as such)?

The recommendations set out in CG1 do not specifically cover the needs of
the parents or carers. However, please see recommendation 1.1.6.2 which
states that ‘families and carers should be offered the opportunity to
participate in family or carer support programmes where they exist.’

5.     What recommendations have been made by NICE for Mental Health 
specialists to consider, in this same instance, invoking Family Work (e.g.
as in the Meriden Family Programme) as a means of working with parents,
siblings or carers of the affected person, to try and help engage that
person in remedial treatment, and to help those others (the family) manage
the day-to-day situations in which they might find themselves; also even
to help with reassuring and stabilising the affected person at times when
illness attacks?

NICE did not make specific recommendations regarding the ‘Meriden Family
Programme’ in CG1. However, please see recommendations 1.4.4.6 to 1.4.4.11
on page 17 of CG1 for more general recommendations regarding family
intervention work.

 

6.  What statistics are available on the numbers of suicides and incidents
of self-harming or harming others in those persons ill as in (1) above,
who have been diagnosed with a schizophrenic or paranoid illness, but have
not been judged Sectionable; who deny prescribed medication, and are not
monitored, (i.e. are not assigned to case-workers, key-workers or
equivalent contacts in Mental Health Services)?

 

This information is not held by NICE, however you may be able to obtain
some data from:

 

·         NHS Information Centre – [2]http://www.ic.nhs.uk/

·         Office for National Statistics -
[3]http://www.statistics.gov.uk/hub/index.h...

 

I hope this information is helpful to you. The response time for your
request on this occasion was 13 working days.

 

If you are unhappy with this response and wish to make a formal complaint
 it must be made in writing by letter, fax or email within 20 working days
of the Institute’s response to you and sent to:

 

Alana Christopher

Associate Director, Corporate Office

National Institute for Health and Clinical Excellence

MidCity Place

71 High Holborn

London WC1V 6NA

Email: [4][email address]

 

Once we have received your complaint, you will be sent an acknowledgement
within two working days. The Associate Director, Corporate Office, will
review your complaint and a full reply will be sent to you within 20
working days.

 

If you are not content with the outcome your complaint, you may apply
directly to the Information Commissioner for a decision who can be
contacted at: The Information Commissioner’s Office, Wycliffe House, Water
Lane, Wilmslow, Cheshire SK9 5AF.

 

Kind regards

Janet 

 

Janet Fahie

Communications Executive

National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United
Kingdom
Tel: 44 (0)845 003 7781 | Fax: 44 (0)845 003 7785

Web: [5]http://nice.org.uk

 

 

Janet Fahie

Communications Executive

National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United
Kingdom
Tel: 44 (0)845 003 7781 | Fax: 44 (0)845 003 7785

Web: [6]http://nice.org.uk

 

The information contained in this message and any attachments is intended
for the addressee(s) only. If you are not the addressee, you may not
disclose, reproduce or distribute this message. If you have received this
message in error, please advise the sender and delete it from your system.
Any personal data sent in reply to this message will be used in accordance
with provisions of the Data Protection Act 1998 and only for the purposes
of the Institute's work.

All messages sent by NICE are checked for viruses, but we recommend that
you carry out your own checks on any attachment to this message. We cannot
accept liability for any loss or damage caused by software viruses.

http://www.nice.org.uk

References

Visible links
1. http://guidance.nice.org.uk/CG82
2. http://www.ic.nhs.uk/
3. http://www.statistics.gov.uk/hub/index.h...
4. mailto:[email address]
5. http://nice.org.uk/
6. http://nice.org.uk/

Dear NICE,

Thank you Janet Fahie for your answer which tackles all my questions, apart from the statistics which might have indicated how well the procedures are/were understood and implemented in the field.

I think the fact that neither our Mental Health Trust (Birmingham and Solihull) or our GPs (Shirley Medical Centre) really knew how best to deal with us or my son with his problem, is confirmed by you answers.

We were misled, starved of communication, and let down by both those services despite requesting better help (of both services) before my son died. The GPs particularly appeared to be oblivious of their responsibilities to correctly advise, record and refer.

An element in further distress to me was that both services delivered an incomplete, misleading and dishonest response as an 'investigation report'.

This points to the need for NHS investigation procedure steps to be the subject of further guidelines - and this is something I may next ask when outcomes are clearer. This would apply particularly to GPs who do not have the benefit of proper business management and documenting techniques.

I think what might be lacking in clarity is the understanding of how 'Patient Confidentiality' is to be interpreted and the belief that nothing can be done without compromising this in some way. I don't see there is anything to prevent a GP for instance to investigate or refer on their own account to check status of treatment and discuss with secondary care or Social services whether assessment is needed, either of patient or carer health, after being advised that there is an ongoing problem. Failure to do this widens the opportunity for self harm and attacks by patients with mental illness to be the only trigger to take action.

In my son's case, the Coroner has asked both yourselves (NICE) and BSMHT questions relating to methods employed in instances of this kind and I await those responses.

Yours sincerely,

C Rock

NICE Mail, National Institute for Health and Clinical Excellence

Dear Sir/Madam

 

In response to your follow up e-mail, I can confirm that NICE has
responded to correspondence from H M Coroner about the issues raised in
your son***s case.

 

Kind regards

Janet

 

Janet Fahie

Communications Executive

National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United
Kingdom
Tel: 44 (0)845 003 7781 | Fax: 44 (0)845 003 7785

Web: [1]http://nice.org.uk

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All messages sent by NICE are checked for viruses, but we recommend that
you carry out your own checks on any attachment to this message. We cannot
accept liability for any loss or damage caused by software viruses.

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References

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Dear NICE Mail,

Thank you for your responses. I have closed the request to you but have noted that you are unable to supply the statistical information re para (6) which I will endeavour to find elsewhere if still relevant to my purpose.

I also note that the request made to you by the Coroner in our case (under Rule 43, Coroners Rules 1984 (as amended 2008)) has been responded-to, but I have not yet heard the outcome.

It appears to me that although good recommendation was in place at the time of my son's illness - and you have clarified some points relevant to family practitioners and secondary services - the practitioners were not aware of the procedures or for some reason did not think to implement them.

I have as yet received no coherent explanation for this; especially grieving for us now as we had intermittently made efforts to get better engagement over 5 years, but messages were ignored and actions blocked by GP and Mental Health staff alike.

This should NOT have happened and NHS people were arrogant to think they had no need of parents warnings and input to approach, engagement and treatment.

Again thank you for your responses.

Yours sincerely,

C Rock

C Rock left an annotation ()

As an update to the case which prompted my original enquiry, I can now offer some new information, which is going to cause much trouble for the NHS Trust themselves and for our GPs responsible for so-called Primary Care.

As a result of an independent assessment of matters of care leading to my son's death, legal claim of negligence was put to Birmingham and Solihull Mental Health Foundation Trust (BSMHFT) whom, we claimed, had acted negligently on several counts in their dealings. Actually the failures were blatantly clear to us as time went on even before our son's death (also Witness evidenced). However the Trust have chosen to ignore certain facts and deny the claims on very shaky grounds which don't even match up with fact.

One of our claims was that the Trust gave no named person (key worker?) or even a telephone contact to be used in case of emergency, relapse or worsening of mental condition with our son.

Now, in official reply to accusation of the Trust being inaccessible to us (as parents, and the only persons with the patients interests at heart) they have had the abject insolence to state "We (the parents) could always have gone to the GP to get a referral...".

This is getting interesting. We had tried on numerous occasions (starting 5½ years before our son's death) to get the GP engaged to do something about our son's illness - to get a referral (as evidenced and documented in GP's medical records). On such occasions we were put off and told that Patient Confidentiality meant that nothing could be done on the report of a '3rd party'.

The fact that we could never get in touch with the right person at the right time, for action, was a major complaint of ours. The fact that our GP was uncooperative in this approach was ultimately the reason our son did not get early diagnosis and proper treatment when it was needed.

We took our case against the Mental Health Trust also for all the subsequent failures of treatment - after having bypassed the GP to get it - always with delays, time wasting and negative responses from BSMHFT (who even had the gall to imply that 3 to 5 weeks delay was 'prompt attention').

So now let us see how this indistinctness and uncertainty is to be solved. The Mental Health Trust say glibly we could have gone to the GP; and the GP is saying she couldn't refer without breaking so-called 'Confidentiality'.

But while they argue about this, each certain of their position, others may be dying for access to treatment. It may be that while misinformed GPs are sending people away rather than referring for specialisms outside their experience, nothing will be done until a 'major incident' prompts another round of composing (for the primary benefit of the Media) 'lessons' which are never 'learnt'.

Can it be that GPs and Trust will somehow inject intelligence into their approach and actually follow NICE guidelines in involving the family (or other closely involved '3rd party') in access to Services and Treatment plans. Also perhaps someone will update the Ombudsman's distant advisers on current guidelines, to get more investigations under way, and then some pressure on NHS Trusts to actually follow the guidelines.

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