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The Fitzpatrick Building 188 – 194 York Way by olliegoblue33

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									                                                                       The Fitzpatrick Building
                                                                       188 – 194 York Way
                                                                       London N7 9AS
                                                                       T: 020 7697 1520
                                                                       F: 020 7697 1530
                                                                       E: enquiries@ncpc.org.uk
                                                                       W: www.ncpc.org.uk


Introduction to questionnaire

Background
This introduction describes the first of series of studies to explore the interface between palliative
care, respiratory and rehabilitation services in England, Wales and Northern Ireland, with regard to
the care of patients with CRD. We include a broad range of chronic diseases under CRD, e.g.,
COPD, fibrosing alveolitis/ idiopathic pulmonary fibrosis, industrial lung disease, cystic fibrosis etc.

Ideally we would like to reach the whole range of disciplines which provide these services in acute
trusts, primary care settings and in the voluntary/independent sectors throughout the country. As
a starting point this study, which you are being asked to help with, will seek to provide a cross-
sectional picture of service provision and the attitudes of clinicians who work in three service
specialties.

Aim of present survey:
- To describe the existing access to specialist palliative care (SPC) services for people with
   CRD, and current gaps in service provision.
- To explore the interaction between SPC services and respiratory / rehabilitation services in
   caring for people with CRD
- To identify the views of physicians working in palliative medicine regarding how their services
   should be configured to meet the needs of people with CRD.

Method
This questionnaire is being circulated to consultants in Palliative Medicine via the APM.

Other questionnaires in this series will go to consultants in Respiratory Medicine and Thoracic
Surgery and to specialists working in rehabilitation, via their respective professional organisations.

Consultants will be asked to discuss with their multidisciplinary teams in making their response, as
well as with other medical consultant colleagues in their specialty. Those working in more than
one centre will be asked to complete a questionnaire for each.

The questionnaire
The questionnaire is divided into 3 parts:
Part 1 describes the service and the type of patients being treated
Part 2 explores the current interaction with the other specialties
Part 3 uses clinical scenarios to identify views regarding how services should interact in the future
to meet the needs of people with CRD.
Part 4 sets out a good practice template for you to complete with any examples of good
practice in this area.

The questionnaire is designed to be customised for the three different groups of specialists, but
contains common core elements in order to provide reciprocal information.
PART 1: ABOUT YOUR CURRENT SERVICE

1.1 Do you provide palliative care for patients with chronic respiratory disease (CRD)? This
includes – COPD; fibrosing alveolitis/idiopathic pulmonary fibrosis; industrial lung disease; cystic
fibrosis.

                            Yes (please go to 1.2 on             No (please answer 1.1.1 – 1.1.4 and
                                 next page)                          return the questionnaire).

       1.1.1   Please indicate the reasons why you do not provide palliative care for patients with
               CRD: (Tick all that apply)

                            Lack of time for clinicians
                            Financial restriction of service
                            Lack of expertise in clinical team
                            Lack of support from local PCTs
                            Lack of support from local acute trust
                            Policy of local independent service, e.g. hospice
                            Other services in the locality provide this – give details:
                            Never been asked
                            Other reason – please specify:

       1.1.2   Although you do not (presently) provide palliative care for patients with CRD, do you
               think there is a future role for specialist palliative care in this group of patients?
               (Tick one)


                             No                        Occasionally               Often


       1.1.3 Please expand if necessary, e.g. your views on current restraints, e.g. training needs,
             workforce requirements, funding:




       Thank you for completing this part of the questionnaire. Please return this via email
       at a.khatri@ncpc.org.uk or by post to:
       Ajeet Khatri, Data Analyst, NCPC, 188-194 York Way, London, N7 9AS




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            Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007
1.2 If you answered ‘yes’ to question 1.1, which types of CRD do you manage? (Tick all that apply)


                         Patients with stable         Patients with            Patients with
                         disease, e.g. for            symptomatic              advanced disease,
                         respite care                 disease                  e.g. for end of life
                                                                               care
COPD

          Yes                        Yes                        Yes                         Yes
Fibrosing alveolitis/
idiopathic
pulmonary fibrosis
          Yes                        Yes                        Yes                         Yes
Industrial lung
disease
          Yes                        Yes                        Yes                         Yes
Cystic fibrosis

          Yes                        Yes                        Yes                         Yes

1.3 Is there a limit on the number of patients with CRD that your service accepts?


                              No (please go to 1.4)               Yes. A Limit of:

       1.3.1 What is the basis of this limit (e.g. funding, bed numbers)?




       1.3.2    Who sets the limit to the number you manage?
                (Tick one for each row)

                                            Yes              No                N/A

                Myself
                My service
                Acute Trust
                PCT
                Other




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            Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007
1.4 Do you accept referrals for CRD in:
    (Tick one for each type of care)

                                                            Yes           No            N/A

                 Hospice inpatient care
                 Home care
                 Day care
                 Hospital inpatient support
                 Hospital outpatient review


1.5 Which specialist disciplines are represented in your multi-disciplinary team caring for CRD?
    (Tick all that apply)

Specialty trained medical staff                                   Specialty trained nursing staff

   Palliative medicine                                               Palliative care
   Respiratory medicine                                              Respiratory
   Thoracic surgery                                                  Rehabilitation
   Rehab medicine

Other supportive care staff

   Physiotherapy                                      Social work
   Occupational therapy                               Spiritual advisor
   Dietetics/ nutritional support                     Bereavement counsellor
   Psychology                                         Other counsellor
   Music/ art therapy                                 Complimentary therapies

   Other specialist staff / disciplines – please specify:


1.6a Have you cared for a CRD patient requiring assisted ventilation?

                                                                       In-patient      Home
                                                                       Yes     No      Yes No
                            Non-invasive ventilation
                            Tube ventilation
If you have answered ‘No’ is this because of:
                                     Insufficient staff training?
                                             Resource issues?
                                           Not been asked to?
Other (please specify):


1.6b Have you ever requested assisted ventilation to be initiated?


                     No              Yes. Number of patients in the past year:


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              Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007
     PART 2: CURRENT INTERFACE BETWEEN RESPIRATORY SERVICES,
           REHAB AND SPECIALIST PALLIATIVE CARE SERVICES

2.1 Which of the following are existing core elements of your service for people with CRD?

Tick all                                                                                           Tick the
that apply                                                                                         three most
                                                                                                   important

      Assessment and diagnosis

      Medical control of disease progression /prevention of complications

      Surgical interventions for disease and symptom management

      Palliative management of symptoms e.g. pain, depression, dyspnoea

      Provision of therapies for rehabilitation

      Provision of aids, equipment e.g. aids to daily living, mobility

      Practical co-ordination of support services including NHS, voluntary, social services etc.

      Psychological support

      Social support

      Spiritual support

      Advance care planning

      Management of end of life care

      Bereavement support


2.2 Leaving aside any current restraints, which service elements would you see as ideal core
contributions of the various services that interface in the care of people with CRD?
(Tick all that apply – there may be some overlap)

Respiratory     Rehab          Palliative
services        services       care           Service elements
                               services
                                              Assessment and diagnosis

                                              Medical control of disease progression / prevention of
                                              complications
                                              Surgical interventions for disease and symptom management

                                              Palliative management of symptoms, e.g. pain, depression,
                                              dyspnoea



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              Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007
                                               Provision of aids, equipment e.g. aids for daily living, mobility

                                               Practical co-ordination of support services
                                               including NHS, voluntary, social services etc

                                               Psychological support

                                               Social support

                                               Spiritual support

                                               Advance care planning

                                               Management of end of life
                                               Bereavement support


2.3 What kind of external links does your service have in relation to patients with CRD?
(Tick all that apply)

                                                           Can refer to    Visit my service      Phone advice

        Respiratory medicine
        Thoracic surgery
        Rehabilitation services
        Primary health care team
        Social services
        Charity funded respiratory nurses
        Other (please specify):




2.4 How easily can patients with CRD in your locality currently access the following services, if they
need them? (Tick one per row)




Service                                                              Easily       With     Rarely         Not at
                                                                                difficulty                 all
Palliative care consultation for in-patients in hospital

Palliative medicine out-patient clinic in hospital

Community palliative care services - multidisciplinary

Community palliative care services – nursing only

Hospice in-patient care

Hospice day-care
Specialist consultation/advice regarding rehab/support for in-
patients in hospital


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              Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007
Community rehabilitation/disability support services for
patients at home
Provision of other aids and equipment to support care at
home
Respiratory assessment

Nutritional assessment/support

Advance care planning support




2.5 Do you perceive gaps in the current specialist palliative care services in your locality for
patients with CRD?

                              Yes                                 No

        2.5.1 If yes, please specify below:




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             Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007
PART 3: VIEWS REGARDING THE FUTURE INTERACTION OF SERVICES IN
MEETING THE CARE NEEDS OF PEOPLE WITH CRD

3.1 Please consider the six scenarios below and for each one, tick the appropriate box(es) in the
grid on next page.

Scenario 1: A 67 year old man with COPD has been admitted to hospital with acute exacerbations six
times in the last year. He has developed congestive cardiac failure, is grossly oedematous and is
breathless on minimal exertion. He is on long-term oxygen therapy via a concentrator. Recently he
has become depressed and expressed suicidal thoughts. He has a history of alcohol abuse. His wife
has asked his GP for urgent help.

Scenario 2: A 55 year old man has emphysema for the past five years. He has become progressively
thinner and is no longer able to leave the house. He suffers frequent panic attacks and is calling the
out of hours deputizing service several nights a week. He refuses to go into hospital. He lives with his
older sister, who has severe arthritis and struggles to look after him. His GP calls you for advice and
help.

Scenario 3: A 23 year woman has cystic fibrosis and is awaiting lung transplantation, but has
deteriorated with recurrent chest infections and cor pulmonale. She went into acute respiratory failure
after her GP prescribed night sedation for her. After intensive management in hospital, she remains
extremely breathless and anxious. Her parents have asked for help and are reluctant to take her home
without additional support. The respiratory team has approached the hospital palliative care service for
their input.

Scenario 4: A 73 year old woman has advanced COPD for which she has non-invasive ventilation
and is well-cared for by her husband and two daughters. However, she was recently diagnosed with
myeloma and has started thalidomide with dexamethasone. As a result of her myeloma bone disease
she has severe pain in her back and shoulders and has now developed peripheral neuropathy from the
thalidomide. Her IG count has responded well but she is still in considerable pain, even after
radiotherapy. Her GP and chest physician are reluctant to prescribe opioids because of her respiratory
failure and she is only on nefopam. Her daughter works as a volunteer in the local hospice and has
asked the matron for help.

Scenario 5: A 40 year old man has cryptogenic fibrosing alveolitis which initially responded to
immunosuppressive therapy, but has now progressed. He is increasingly dyspnoeic and his GP
started him on morphine SR tablets. These helped the breathing but he became extremely
constipated and has been admitted to hospital with faecal impaction. During the admission he
developed a renal tract infection and has gone into chronic renal failure. The medical team are keen to
discharge him and have stopped his morphine but he has become extremely breathless again. They
have called you.

Scenario 6: A retired coal miner aged 84 has COPD and advanced pneumoconiosis. He lives alone
and has managed well until he developed a recent stroke, which left him with a mild hemiparesis and
inability to swallow. He has been given a PEG for feeding but cannot manage this himself. He tries to
drink and eat which has led to several aspiration pneumonias, leaving him even more breathless than
usual. He is also constantly moaning in pain but his hospital medical team cannot identify a reason for
this. His daughter has asked for the hospital palliative care team to see him, because they looked after
her husband who died with severe pain from lung cancer and she wants them to take over her father
too.


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             Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007
Now, tick the appropriate boxes in the grid below for the above scenarios.

                  Which
                                      Which professionals
                  professionals                                Once off or short-
                                      should routinely be                             Ongoing contact
                  should take the                              term contact
                                      involved in care
                  lead for care
Scenario          1 2 3 4 5 6 1           2    3   4   5    6 1     2   3 4 5 6 1 2 3 4 5 6
Consultant
chest
physician
Consultant
thoracic
surgeon
Respiratory
specialist
nurse
Rehabilitation
unit
Community
rehab support
team
Hospital
in-patient
palliative care
Hospital
palliative care
out-patient
clinic
Hospice in-
patient unit
Hospice
daycare unit
Community
palliative care
GP / District
nurse




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              Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007
3.2 Please enter any comments on the above scenarios in the box below:




3.3 Finally, do you have any further comments regarding the future role of palliative medicine with
respect to CRD, e.g. training needs during SpR programme or post-consultant level; workforce
requirements to take on extra workload; potential sources of new funding for this area?




Many thanks for completing the questionnaire. Please return this to Ajeet Khatri
via email at a.khatri@ncpc.org.uk
or by post to:
NCPC, The Fitzpatrick Building, 188-194 York Way, London, N7 9AS. Tel: 020 7697 1520.




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            Please return this questionnaire to: a.khatri@ncpc.org.uk by 12 November 2007

								
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