1.  BACKGROUND

  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 care.

2.  ISSUES OF CHOICE IN THE PROVISION, LOCATION AND TIMELINESS OF PALLIATIVE CARE SERVICES, INCLUDING SUPPORT TO PEOPLE IN THEIR OWN HOMES

  2.1  In our experience, there is no choice offered in the provision, location and timeliness of palliative care services.

  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 THE DISTRIBUTION OF PROVISION, BOTH GEOGRAPHICAL AND BETWEEN DIFFERENT AGE GROUPS

  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 of services.

4.  SUPPORT SERVICES INCLUDING DOMICILIARY SUPPORT AND PERSONAL CARE

  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 WHICH SERVICES MEET THE NEEDS OF DIFFERENT AGE GROUPS AND DIFFERENT SERVICE USERS

  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 AND EFFECTIVENESS OF GOVERNMENT POLICY INCLUDING THE NATIONAL SERVICE FRAMEWORKS, THE CANCER PLAN AND NICE RECOMMENDATIONS

  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 be.

  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 recommendations.

February 2004