APPENDIX 24
Memorandum by Mood Swings Network (MH
59)
MOOD SWINGS
NETWORK
This organisation was set up by former members of
the Regional Management Committee of the Manic Depression Fellowship.
The reason for this "break away" was as follows: In
the autumn of 1998, MDF (NW) applied to the National Lottery Charities
Board (NW) for a grant to fund two full-time staff over a period
of three years. One member of staff would run the office and oversee
our volunteer helpers; the other person would develop the network
of self-help groups in the Northwest (there were already 28 such
groups that had been set up by the Regional Office).
In January 1999, the NLCB awarded MDF (NW) £186,000
for this project. However, the head quarter's staff of MDF strongly
objected to the thought of MDF (NW) being able to manage this
fund. After a great deal of work trying to solve the problem,
NLCB withdrew the offer in March 1999.
It was therefore decided to set up Mood Swings
Network as an independent charity and company.
1.0 This memorandum has been submitted at
very short notice on behalf of people living in the north west
of England who are affected by manic depression (bipolar disorder).
1.1 Bipolar disorder is a medical condition
in which people have mood swings out of proportion, or totally
unrelated, to things going on in their lives. These swings affect
thoughts, feelings, physical health, behaviour and functioning.
It is a treatable medical disorder for which there are specific
medications that help most people. Bipolar disorder tends to run
in families. If one parent has bipolar disorder, and the other
does not, there is a one in seven chance that an off-spring will
develop it. The chance may be greater if there is a number of
other relatives with bipolar disorder, in the family. This is
not the place for a full description of the illness. We expect
professionals in the field to be available to the Committee.
1.2 This illness not only affects the sufferers,
but it does have a large impact on other members of the family.
This is where support and advice from the Self-Help Groups is
so important.
2. PROBLEMS THAT
AFFECT SUFFERERS
2.1 Bipolar disorder is an episodic illness:
for most of the time, people with it are quite "normal".
It is probably fair to say that these people are often those with
higher educational achievements and can attain high status in
employment, in all walks of life. However, stress at work can
"trigger" an episode—mania or depression; this
results in the inability to hold down some jobs which causes financial
problems, so causing more stress . . .
2.2 The result of the above is that many
sufferers depend upon state benefits of various kinds in order
to live an otherwise "normal" life. If he/she is hospitalised,
benefits are cut. This stresses the patient even more and delays
recovery. Getting the benefits reinstated takes a long time which
often results in deep, clinical depression and further hospitalisation.
This costs society a lot of money.
2.3 MSN and similar organisations, would
like to see a system whereby state benefits are suspended during
hospitalisation, to be immediately reinstated upon the patient
being discharged. We submit that such a system would reduce the
stay in hospital; it would reduce the bureaucratic costs of reinstatement
and thus save society money.
3. THE RIGHTS
OF CARERS
3.1 Conflict between a person experiencing
a manic episode and his/her carer, family and other loved ones
is common. This means it is extremely difficult to persuade such
a patient into hospital or to seek professional, psychiatric help.
Carers would like written support for a legally binding document,
agreed and signed by the user and carer regarding treatment etc
required. At present, many professionals are not listening to
carers about the knowledge of early-warning signs of the user's
illness. Some professionals are not taking notice of the past
history of patterns, of behaviour, that develop as early-warning
symptoms.
3.2 We have at least one example of a husband
leaving hospital (as a voluntary patient) when the staff said
he was "alright". His wife was not told that he had
left. He was eventually found in Ireland, in a very bad state
and was "sectioned". All this was because no one would
listen to his wife.
4. HOSPITAL ACCOMMODATION
4.1 People who are admitted to hospital
with bipolar disorder symptoms are not, usually, physically ill.
Therefore, their temporary living environment needs to be less
"clinical" and more "homely". Their surroundings
should be restful and pleasant. We are not looking for luxury
hotel accommodation but something more than drab colour schemes
on the walls; we would hope to have a sitting area somewhat more
pleasant than a corridor lined with some seats and having no window
overlooking the outside world. There should be a quiet, smoke-free
room where patients can rest and (try to) think. In some hospitals,
a lounge or other room used for patients' relaxation is commandeered
for "a ward round".
4.2 Ideally, every patient needs a single
room to sleep and wash, to keep personal belongings. Some hospitals
are able to meet this need, but many are not.
4.3 The administration of drugs plays a
very important part of the current patient-recovery scene. Early
diagnosis of bipolar disorder is difficult. This means that, particularly
in the early days, drug type and dose, are "hit and miss".
We would hope that funds become available to develop a more scientific
assessment of patients' needs in this direction.
4.5 The administration of drugs is only
part of the recovery programme. Most patients benefit from talking
to a good listener—particularly when they are "high".
It is unfortunate that many of the nursing staff in hospitals
do not avail themselves of this function; we realise that there
is much administrative work to carry out, but we should appreciate
more staff time being spent with the patients rather than in an
office.
5. ACCESS TO
COMMUNITY CARE
5.1 Contact with professionals when a patient
is not in hospital is vital to help stabilise the illness and
to minimise hospitalisation. Help provided by community psychiatric
nurses, social services' mental health community support teams
are of immense importance. These services vary so much that there
seems to be "post code" luck whether one gets them or
not. There must be more information about these services provided
in all areas of medical care to which "our" patients
have access. Intervention by these services as soon as is necessary
from the patients' point of view can only save society the costs
of hospitalisation.
6. CONCLUSIONS
6.1 Obviously there is a need for improvement
to the services provided to help people who suffer from bipolar
disorder (as for people suffering from other psychiatric illnesses).
It does not automatically mean that huge amounts of money should
be "thrown" at mental health services: we think that
the money that is already spent could be distributed in a more
efficient way. Comparatively small sums spent upon minor "environmental"
improvements within hospitals would probably more than be self-financing
over a few years.
6.2 We have not mentioned rehabilitation
units, nor respite breaks for carers. We have, we think highlighted
those areas which, at present, seem to need urgent attention.
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