Memorandum by British Lung Foundation
1.1 The British Lung Foundation (BLF) is
the only charity working to help the eight million people in the
UK with all lung conditions.
1.2 The BLF runs a network of support groups
across the country for people living with lung disease. There
are more than 100 Breathe Easy Groups across the UK, all run by
patients to support patients.
1.3 The BLF provides a wide range of information
on all 43 lung conditions, in the form of leaflets and fact sheets,
all of which can be accessed via our website (www.lunguk.org).
1.4 The BLF also funds medical research
with the aim of finding solutions to lung diseases.
1.5 The BLF would like to submit the following
evidence to the Health Select Committee inquiry into palliative
2. ISSUES OF
2.1 In our experience, there is no choice
offered in the provision, location and timeliness of palliative
2.2 An assessment of need is made by social
services and the service offered is dependent on availability
and the determination of need made by the social worker.
2.3 Patients are not offered a choice in
the type of care they receive or the way that care is delivered.
2.4 Patients suffering from respiratory
illness have good and bad days and to determine need on such an
assessment does not take this into account.
3. EQUITY IN
3.1 In our experience, there is no equity
in the provision of palliative care services.
3.2 Geographically there is considerable
variation between services offered by different councils.
3.3 There is a mixed picture across the
UK on the provision of specialist respiratory nurses. Provision
of care depends entirely on whether a respiratory nurse makes
home visits in the patient's area.
3.4 Unfortunately, this is another area
where people suffering with a lung condition face a postcode lottery
4. SUPPORT SERVICES
4.1 Palliative care is offered only when
the patient's condition becomes very severe.
4.2 The support needed in the earlier stages
of a disease, when a patient is in need of help to run their house,
tend to their garden and go shopping is often not provided at
all and patients are forced to rely on family and friends.
4.3 There is very limited support for family
and friends taking the role of carer, many of whom are faced with
lifting patients without proper training or specialist equipment.
5. EXTENT TO
5.1 Palliative care services tend to be
focused towards cancer patients. Serious lung diseases, such as
chronic obstructive pulmonary disease (COPD), which are equally
debilitating are not thought of in this regard, although patients
may suffer for up to 10 years in a state of extreme distress.
5.2 Patients with respiratory conditions
do not have access to hospice care.
5.3 One COPD patient and member of one of
the Breathe Easy support groups explained that he considered himself
lucky to have been additionally diagnosed with lung cancer as
this afforded him access to hospice care.
6. THE IMPACT
6.1 There is no NSF for lung disease which
means that services for patients are not prioritised and there
is a lack of funding across the board.
6.2 NICE recommendations on the management
of COPD are due for publication on 25 February 2004. It is as
yet unclear what the recommendations for palliative care will
6.3 The BLF is concerned that no extra resource
will be provided to allow the NICE guideline to be implemented.
Funding is a significant issue due to the lack of an NSF, therefore
there is no requirement for Primary Care Trusts to implement the