PRACTICE PANEL Older people’s services – Leeds social
services and primary care trust
The name of the service user
has been changed
Bill Thompson, 64, was diagnosed with Parkinson’s disease
five years ago. His wife died two years ago. He now lives alone but
is supported by a care package, including home care, meals on
wheels twice weekly, day care and respite care. His daughter lives
40 miles away but tries to visit him every fortnight.
: Recently Bill’s mobility has deteriorated
involved with him – his daughter, care staff, neighbours and
friends – are expressing concerns that he remains at home.
Bill, a proud man, is adamant that he wishes to stay (and die) at
home and becomes angry and agitated when residential care is
discussed. However, his care package does not meet his needs. He
falls frequently but refuses to be admitted into hospital when
ambulance crews call to lift him. His slow mobility prevents him
reaching the commode in time but he removes his incontinence pad
during the night so he is soaking wet when the home carers arrive
each morning. Bill also spends hours chopping wood during the night
in his backyard, even though he has gas central heating and a gas
fire in the front room where he sleeps. A fire guard has been
bought for his wood fire but Bill removes this at times and spends
hours lighting the fire. Bill’s social worker feels that
supporting his right to self-determination is not easy when faced
with such strong opposition.
As Bill wants to remain at home, it is important to explore the
deterioration in his level of functioning. A thorough reassessment
of his social care needs is required and this can be compared with
any baseline assessment information that already exists from
previous assessments. It is also important that the current
progression of his Parkinson’s disease is considered by
doctors. If Bill is not under a neurologist, with his permission he
should be referred. If he is, a review would be helpful in
determining the effect the illness is having on him.
The disease may be affecting his cognitive functioning. Given the
known links between Parkinson’s and dementia it may help to
seek a psychiatric opinion. There may be depression issues. Bill
has suffered a number of losses, chiefly the death of his wife and
his diminishing independence through Parkinson’s disease. He
is a proud man and may be struggling to come to terms with his
increasingly dependent position. It is important here for the
worker to listen to what Bill is saying about these issues and to
help him come to terms with his reality. Bill’s expressed
wishes are important and should be valued.
There are risks to his current situation and these too need to be
evaluated and the concern of family and friends acknowledged. The
open fire is an obvious risk and Bill’s preoccupation with
that activity needs to explored with him. Does it provide a focus
for him? Could this focus be replaced with a less harmful
Connected to risk is the issue of capacity. Bill may no longer be
able to make informed decisions and this would influence any future
decisions about his care and his wishes.
His mobility problems are exacerbating the continence difficulties
and there may be practical solutions to this by moving his commode.
It would also be useful to enlist the help of an incontinence
This assessment should inform a new care plan to address
Bill’s needs. The aim would be for the multi-disciplinary
elements to work in partnership to provide an effective care
package so that he can remain at his own home for as long as
Within our area the primary care trust has enhanced the
intermediate care team to include a rapid response capability to
prevent unnecessary admissions to hospital.
As this is now an NHS priority a pathway has been developed with
the ambulance service to direct anyone who has fallen, but who does
not need to be admitted to hospital yet requires some support for a
short period, to the rapid response team.
If Bill were to be referred, a falls assessment, which has been
developed city-wide, would be undertaken and the most appropriate
course of treatment instigated. This could be a referral to the
falls clinic to determine the reason why Bill is falling. As he
also suffers from Parkinson’s disease, there would be a
re-assessment of his medication, as this could be a major cause of
his continual falling.
At the same time multi-disciplinary assessments would be undertaken
to determine the effects of his poor mobility. An exercise
programme may be introduced to help improve his mobility and
After all this Bill may be referred on to an outpatient programme
to continue the exercises and to receive information on how to
prevent future falls.
Bill may also be referred to the advanced specialist practitioners
(chronic disease case managers) at the primary care trust, who
would monitor Bill regularly and encourage him to recognise his
problems and to contact his specialist practitioner should he feel
that he is regressing. The intermediate care team would also
re-assess his continence needs.
During this time Bill’s home carers would continue to liaise
with carers. Home carers would be able to provide information on
Bill’s abilities before his recent deterioration. His home
care package may need to be increased.
A referral would also be made to the community psychiatric nurse to
assess why Bill had this need to chop wood and light his fire when
he has adequate heating.
Bill is a reasonably young man whose problems need to be sorted out
and monitored in the future. All of this would need his
This is a difficult situation as it has reached the stage where
even the extensive care package in place is not supporting Bill
adequately. His behaviour seems to endanger his own health and may
be a fire hazard to nearby buildings, write members of Knowsley
Older People’s Voice and other service users.
It is clear that Bill has had a lot to cope with in recent years
with the death of his wife and living with Parkinson’s
disease. One concern is that attempting to force him into any
changes in his lifestyle may be detrimental. He may even have
severe depression, given all he has lived through.
What may help is an assessment from a psychiatrist or a
geriatrician to determine whether he has the symptoms of early
onset dementia. This will also give an indication of Bill’s
capacity to make decisions on his own future.
In the meantime, Bill’s care package should be adjusted so
that he can live independently. It may be possible to offer him the
option to increase his care package to four visits a day and daily
meals on wheels. It may be that the family needs to speak to him
about considering private care, perhaps with care assistants
staying the night.
There are a range of measures that can be offered to Bill to help
prevent his frequent falls. These could include appropriate
footwear, handrails and a visit from a representative of the falls
Bill’s habit of chopping wood and using an open fire within
his property could be addressed if a fire brigade safety and
prevention officer spoke to him. It might be that a more
authoritative figure may have the desired effect.
Further to this it may be that Bill has concerns over using the
central heating and gas fires. These could be linked to fears about
his ability to pay fuel bills or even whether he knows how to
operate the central heating system.
Bill’s sleep patterns seem to be causing him difficulties and
it could be that this is a side effect of any medication he is
taking. It may be worth considering reviewing his medication,
perhaps when he attends respite care.
In conclusion, for Bill, his home is where he wants to be and
measures should be provided to enable him to remain
Knowsley Older People’s Voice is a
group in Merseyside. Additional comments were
provided by members of the Aging Well Group, Kirkby, and service
users from St Mary’s Day Care Centre in Halewood,