|
CJD
A guide for patients and carers
What support is available for carers of people with CJD?
(NB:This section contains information about the advanced stages of the disease that you may find distressing)
With increasing disability, patients require considerable nursing and practical support. Apart from general help with feeding, washing and moving around, some people also need help with urinating (using a medically-inserted tube called a urinary catheter) and may need to be given nutrition and fluid through a feeding tube.
With increasing disability, patients require considerable nursing and practical support. Apart from general help with feeding, washing and moving around, some people also need help with urinating (using a medically-inserted tube called a urinary catheter) and may need to be given nutrition and fluid through a feeding tube.
It may be possible to look after people with CJD at home, but this depends on the stage and severity of their illness, how much medical and other support is available locally and the ability of individual carers to cope with often distressing aspects of the condition. If you are a carer, it may well be that rather than trying to cope at home, you may prefer instead to use the services of a hospital or hospice.
The Department of Health recognises the difficulties that carers may face when looking after someone with CJD. When a new case is diagnosed, doctors are requested to report it to the National CJD Surveillance Unit based at Edinburgh University, which is also home to the National CJD Care Team.
The Care Team has been set up to ensure that any gaps in local services which leave people affected by CJD with unmet needs or which hinder carers, are addressed, and an appropriate package of care put together.This is likely to involve not only doctors and nurses, but also occupational therapists, physiotherapists, speech therapists, dietitians, specialist incontinence advisors, palliative and terminal care teams and social workers.These diverse professionals will be coordinated by the patients’ "keyworker."
This keyworker, who can be from health or social services, such as a GP, neurologist or social worker, is allocated when a new diagnosis of CJD is made.The aim is to identify someone with whom the patient, carer and family feel comfortable and who can work across all the areas from which help and support are received to ensure that these are as good and appropriate as possible.You will be offered the
opportunity to help choose who this person should be.The keyworker will play an important role in liaising with the National Care Team if appropriate and also ensuring that those who have variant CJD and their families gain access to the government compensation scheme.
Organisations, including specialist support agencies and networks, which can provide help and advice, are listed at the end of this booklet.
In recognition of the role played by social workers in the care of those with CJD, the Association of Directors of Social Services has, in conjunction with the CJD Support Network, published good practice guidelines, which is available from the Network (see Organisations that may be able to help).
The Department of Health recognises the difficulties that carers may face when looking after someone with CJD. When a new case is diagnosed, doctors are requested to report it to the National CJD Surveillance Unit based at Edinburgh University, which is also home to the National CJD Care Team.
The Care Team has been set up to ensure that any gaps in local services which leave people affected by CJD with unmet needs or which hinder carers, are addressed, and an appropriate package of care put together.This is likely to involve not only doctors and nurses, but also occupational therapists, physiotherapists, speech therapists, dietitians, specialist incontinence advisors, palliative and terminal care teams and social workers.These diverse professionals will be coordinated by the patients’ "keyworker."
This keyworker, who can be from health or social services, such as a GP, neurologist or social worker, is allocated when a new diagnosis of CJD is made.The aim is to identify someone with whom the patient, carer and family feel comfortable and who can work across all the areas from which help and support are received to ensure that these are as good and appropriate as possible.You will be offered the
opportunity to help choose who this person should be.The keyworker will play an important role in liaising with the National Care Team if appropriate and also ensuring that those who have variant CJD and their families gain access to the government compensation scheme.
Organisations, including specialist support agencies and networks, which can provide help and advice, are listed at the end of this booklet.
In recognition of the role played by social workers in the care of those with CJD, the Association of Directors of Social Services has, in conjunction with the CJD Support Network, published good practice guidelines, which is available from the Network (see Organisations that may be able to help).
|
Page 16 of 18
Contents
- Introduction
- What is CJD?
- What are the different types of CJD?
- What precautions do I need to take to stop CJD spreading?
- Can I get CJD from eating meat?
- How does the brain of someone with CJD differ from normal?
- What causes CJD?
- What does "genetic susceptibility" to CJD mean?
- Is there a genetic test for CJD?
- Can CJD be avoided, and is it catching?
- What are the symptoms of CJD, and how does the disease progress?
- How is CJD diagnosed?
- Are other conditions easily mistaken for CJD?
- How is CJD treated?
- What impact can CJD have on families of poepl with the condition?
- What support is available for carers of people with CJD?
- Conclusion
- Organisations that may be able to help
