Frontiers

1
Views of Healthcare Professionals
Dr Rachel Burman
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Characteristics of Healthcare Professionals
Interviewed

• 12 focus groups
• 5 one-to-one interviews
• Primary care - district nurses
• Nursing home staff

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Characteristics of Healthcare Professionals
Interviewed

• Care Homes - BHHI, Leonard Cheshire Home
• Community therapy teams
• Intermediate care centres
• Neuro-rehabilitation centres

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Characteristics of Healthcare Professionals
Interviewed

• Neurologists
• MS nurse specialists
• Specialist Palliative Care providers
• Community teams
• Hospice staff - consultants,nurses,
  physiotherapists

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Focus of this talk

• MS healthcare professionals responses to open
  questions
• Could you tell me what things are most important
  for you working with people affected by MS?
• What are the main problems you encounter in
  caring for people affected by MS?

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Focus of this talk

• Specialist palliative care professionals
  responses to the open questions
• Do you think palliative care has anything to
  offer people with MS?
• What do you think the problems are/might be?

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Important Issues

• Communication
• Co-ordination of care
• Holistic care
• Individual care

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Main Problems

• Lack of continuity of care
• Service delivery
• Disease process
• Lack of resources
• End of life planning

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Lack of Continuity of Care

• FG2 Continuity of care can break down simply
  because people just dont communicate very
  well.
• FG11 I can spend all day on the telephone and
  still not know who is doing what for a
  client.
• FG4 Patients go for an appointment and never
  see the same person twice and have to go
  through everything again from the beginning.

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Service Delivery - Inequality of Provision

• FG6 Sometimes you may go and see a patient who
  is being cared for by district nurses and GPs
  and all of those referrals may have taken place
  other times none of them will.
• FG7 Some people seem to get everything and
  others nothing, often those with no one to speak
  for them.

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Service Delivery - Lack of Access

• FG10 Transport problems are a particular issue
  for severely disabled patients, trying to get
  them to their outpatients appointments, often
  the transport doesnt turn up.
• FG12 Patients (with MS) seem to become a very
  low priority because they cant do anything for
  them. I spend a lot of time trying to access
  services for these people.

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Service Delivery - Inappropriate Rehabilitation
Goals

• HP2 People with severe disability do not fit
  their criteria, its more fast track - they
  are finding it difficult to gain access.
• FG8 Rehabilitation centres dont necessarily
  have the vision of what can be achieved for
  people, if you havent worked with people who
  are severely disabled with MS you tend to see a
  rather limited scenario.

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Disease Process

• Unpredictability of the disease
• Cognitive problems
• Symptoms
• spasm
• bladder and bowel dysfunction
• sexual dysfunction

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Disease Process - Cognitive Problems

• FG7 Pulling together services for people who
  may not be able to make informed decisions about
  their care.
• FG2 People have a resistance to being disabled
  and are unrealistic about what they can do, often
  refuse help.
• FG10 Lack of acceptance about their level of
  functioning and unrealistic expectations of any
  input.

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Lack of Resources

• Lack of social service help with constantly
  changing staff
• Lack of therapists, particularly physiotherapists
• Lack of maintenance therapy
• Lack of psychosocial support

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What do you think palliative care can contribute
to the care of people with MS?

• Symptom control
• Psychosocial support
• End of life planning

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Symptom Control

• FG11 Looking at the symptoms common to
  malignant and non-malignant, its all the same,
  but that much earlier on with dealing with MS
  its very, very relevant.
• FG2 welcome the focus on complex symptom
  control and psychosocial support for families.

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End-of-Life Planning

• FG6 Before you can blink a PEG is inserted and
  there hasnt been a lot of discussion around the
  long term implications.
• HP3 A ringmaster role to help facilitate
  discussions around end-of- life care.
• HP2 End-of-life issues it is difficult
  sometimes to know actually when you are reaching
  that point.
• FG4 Living wills and helping us to help the
  carers and the patients address end-of-life
  issues. When youve got no more time and theres
  no more treatment.

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What do you think palliative care can contribute
to the care of people with MS?

• Symptom control
• Psychosocial support
• End-of-life planning

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Main Problems

• Disease process
• Lack of resources
• Lack of knowledge

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Unpredictability of disease

• FG1 The disease trajectory is often so long,
  knowledge of what will happen next is an issue.
• FG5 With cancer you have the steps more or less
  mapped out for you.
• HP4 Supporting a family and patient through
  multiple losses will be particularly challenging
  with MS.

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Lack of Resources

• HP4 There is undoubtedly a role for us in their
  management, but there is a worry that we may be
  swamped.
• HP5 A referral might be appropriate, but the
  length of contact needed for this client group
  would draw heavily on our resources.

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Lack of Knowledge

• FG5 There is so much in the press about beta
  interferon etc. The technicalities of MS
  treatment seem very complex.
• FG2 Its knowing about any particular therapies
  required in an acute episode, if, say, someone is
  in for symptom control or respite.

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Key Issues

• Consensus on perceived palliative care need
• Consensus between healthcare professionals
  working with MS and people affected by MS
• Mutual lack of knowledge about each others
  specialities
• Need for professional education and information
  exchange