Macmillan Allied Health Professionals Team

• Who can access the service?

  Referrals are accepted for patients who are:

  • registered with a Wigan Clinical Commissioning Group General Practitioner
    
    or

  • resident within the Wigan Borough and not registered with a GP

  and who:

  • have a complex cancer and/or specialist palliative care rehabilitation need
    
    or

  • are experiencing difficulties as a consequence of the complexity of their cancer diagnosis
    
    or

  • have specialist palliative care needs in the end stages of life limiting illness.

  Informed consent for the referral must be gained.

• How can people access the service?

  Referrals are accepted for patients aged 18 and above from all health and social care professionals within Wrightington, Wigan and Leigh NHS Foundation Trust and neighbouring NHS Trusts if the criteria outlined above are met.

  Referrals may be made using our Referral Form (attached) which can be sent via email to Macmillan.ahpteam@nhs.net or posted to the address below (see contact details).

  Self referral for assessment by the Macmillan Allied Health Professionals Team may be made by phoning or writing to the team at the address below (see contact details).

  Please be aware that the team will need to contact your General Practitioner and / or other medical professionals involved in your care before you can be considered for assessment.

  Please note: Referrals for patients who do not meet the criteria of having complex cancer and/or specialist palliative care needs will be returned to the referring agent for referral onward to the general community teams or other specialist teams as appropriate.

• Where is the service offered?

  Appointments may be offered in one or more of the following places according to need:
  Patient’s own home

  • Wigan and Leigh Hospice either in the Outpatient Clinic or Inpatient Unit

  • An NHS Community Clinic

  • Patient's own home

  • other locations as required

• Relaxation Techniques

  These relaxation tracks have been produced by Macmillan Occupational Therapists.

  It is for use as part of your relaxation programme, as advised by your qualified health care professional. Make time to listen to the tracks in a quiet, uninterrputed environment.

  Make sure you will be comfortable while you are listening. Sit in a well-supporting chair or lie on a bed. Start the tracks and follow the instructions

  After listening to all of the tracks, feel free to choose which combination of tracks will suit you best.

  Relaxation is a skill that can, with practice, be learned and enjoyed.

  Track 1 - General Explanation
  Track 2 - The Breathing Exercise
  Track 3 - A Quick Body Check
  Track 4 - Laura Mitchell Relaxation
  Track 5 - A Guided Visualisation

• Contact Details

  Macmillan Allied Health Professionals Team
  Wigan and Leigh Hospice
  Kildare Street
  Hindley
  WN2 3HZ
  Telephone: 01942 525566
  Email: Macmillan.ahpteam@nhs.net

• Macmillan Conference 2023 Therapy Outcome Measures

  TOMs Poster extra information 

  TOMS – The extra bits!

   

  How TOMS works:

  Developed by….

  The TOMS outcome tool was designed to be a simple method of gathering information that can be used across disciplines and client groups covering a broad spectrum of issues associated with therapy and rehabilitation. The idea of the TOMS is that you choose a scale to suit what you are trying to measure, rate the patient from the information you have gathered during your assessment and then re-score them at the end of your treatment intervention e.g., on discharge. The TOMS is a validated tool which enables professionals to describe the relative abilities of an individual across 4 dimensions covering both health and social aspects.

   

  Examples of our most used scales are below:

  • Palliative care scale
  • Dysphagia scale
  • Dietetic intervention for Undernutrition in Adults
  • Dietetic intervention for enteral feeding in Adults
  • Chronic pain
  • Musculoskeletal
  • Multi-factorial conditions

  More than one scale can be chosen if needed e.g., the palliative care scale could be used in conjunction with the chronic pain scale if it was felt this captured the patients complexity better.

   

  Each of the scales contain 4 domains which are rated from 0-5.

  0 would be the lowest someone could score, with 5 being the highest.

  • Impairment
  • Activity
  • Participation
  • Wellbeing / Distress

  The scoring system works on a ‘best fit’ basis. The patient may present in between descriptors. In this case you would choose the descriptor which is ‘best fit’ for the patient.

   

  An example of a TOMS scale: Palliative care scale

  

  

  

  Case studies of TOM Scales being implemented.

  

  

  Questionnaire outcomes

   

  100% of the team understood why we were using the TOM. We feel the team training we completed on TOMS was of real benefit in helping with this.

  75% found it easy or somewhat easy to select an appropriate TOMS scale

  63% felt they had completed TOM for all new patients. Data showed:

  • During our trial period, clinicians completed 96 TOMS scores on a total of 132 new patients
  • This is an uptake rate of 73% within the team

  The main barriers identified were:

  • Time taken (63% of the team felt it took up to 15minutes to complete a TOM)
  • Forgetting to complete the tool as not yet fully integrated into practice

  62% agreed to some degree that the TOMS captured the value of their input with patients. 38% were unsure. The main reservations were:

  • Completing the TOMS did not change day to day practice (recording what has already been done, rather than what could be done differently)

  75% found the TOMS easy to record on our electronic system however, some had reservations around the difficulty in pulling and collating the overall data from the system.

  38% were unsure or did not feel the descriptors were sensitive enough to be used in complex cancers and palliative care:

  • Team members found the TOM didn’t always capture the outcomes for patients with many different complex needs, including end of life care.
  • In patients with a number of impairments, it was sometimes felt the TOMS didn’t fully capture the complexity of the patient and the intervention. An example of this is: A patient with weight loss, malabsorption and requiring a low fibre diet – Choosing a TOM scale to reflect each of these impairments proved difficult.
• Macmillan Conference 2023 Patient Stories

  Story Telling with the Therapy Team

   

  Introduction

  No qualitative patient feedback was being collected in the team. The evidence base suggests the use of narratives can make a service more responsive¹ to patient’s needs and reduces the gap between clinicians and patients². Narratives can help patients cope with their cancer³ and the process of story-telling, has been found to help people enhance their wellbeing⁴. This encouraged us to develop a patient stories programme and incorporate it into our therapy offer with debrief sessions for clinicians and patients and analysis to apply learning to our service.

   

  What told us

  Key themes and key quotes

  Key Themes	Example Quotes
  Impact on and impact of family	“[my wife] has been my absolute rock” “[my wife] was the main of my rehabilitation” “it was terrible for her [to receive news about my condition deteriorating]”       “but through this cancer, [my husband’s] been there for me” “they’re too busy for me they’ve no time for me, my family” “I want [my wife] to go out and do things, and not be concerned or worried about me.” “But I kept everything in because I didn’t want people around me upset” “The initial diagnosis, you know, we were all devastated, heartbroken, absolutely” “was more frightened because of my twin brother dying of the same thing” “I don’t know what I would have done without [my husband]” “I thought I can’t die yet, we’ve not been together long enough.” “you don’t want to be, I want to say burden, I don’t want to feel I’m that.”
  Grieving loss of function	“I grieve for the old me. The old me is gone.” “Frustration probably more than.. You know not being able to do things that we could” “We can’t go out anymore for something to eat because of the way he [the patient] is” “I’ve been really angry” “You know, I suppose why me kind of thing” “I just want to be back to what I was before” “I can’t swim anymore, I can’t ride my bike anymore – My life has changed now” “I’m crying cos it upsets me because my life has just changed since in 2018 and I cant get that back now so now I have to live with what I can do”
  Healthcare systems and healthcare staff	“we went to A&E which wasn’t a very pleasant experience. And it’s not their fault it’s just the way things are at the moment” “I love going seeing [SLT], you know chatting for an hour, maybe over stepping the appointment time” “I still am a little bit annoyed at [my Consultant] for not, for not doing that [further surgery]” “[my hospital admission, post surgery] was the worst experience I’ve ever had”. “The amount of help those ladies [ in the AHP team] gave us were phenomenal” “I didn’t really get any support with my, with the feeding personally at [the hospital]” “I do talk to [SLT] about how I am and everything when I go to see her” “[The Hospice Nurse Specialists] are always helping me with anything that I need” “[The Hospice Nurse Specialist] gave us a lot of emotional, I would say, support” “you made me feel part of the whole thing, and it’s important. [speaking of HNS, AHP, complimentary therapist]” “this has helped me, you coming because the physio aspect and everything” “it was degrading [the hospital experience]” “I can’t praise [my Consultant] enough. I think if I hadn’t have had him I don’t think I’ll be here” “As regards to the dietitian, they’ve been brilliant” “They [DN] were supposed to come out everyday and they didn’t. “SLT here has been brilliant, can’t fault.” “community physio was really good and really helpful”
  Adapting to changes	“I had to learn how to walk and talk” “It took me a while to get to a stage where I could let everybody in” “I feel like I’ve got the strength in myself to handle the [chemotherapy] drugs. I feel I’m ok with that. Even though the radiation has killed my bones” “You feel ugly. You feel like a freak” “I have to sit down even when I’m making a cup of tea or breakfast” “Just plain, simple soup, there’s no bits in it, no nothing, I’ll try it. Cos that’s all you can do is try things” “its very hard to adjust” “People don’t realise when you get sick that it changes your life” “No I never got it back [mobility], through no fault of anybodys, just the way it was”
  Communication of Information	“There’s no leaflet no booklet to say how to do cope at Christmas” “I don’t know where to find somebody who hasn’t got a jaw” “I’m dyslexic….So all these leaflets you’ve got there, are like colours. But nobody’s asked me.” “I’m gonna do something to make the public aware [about dysphagia]” “And he said your cancer’s gone, you’ve got no cancer in your body, erm everything’s fine.” “the hospital is an absolute disaster for communication” “There was communication between [the hospital and hospice]. They’ve been contacting the oncology team, been contacting for the bed, there were somebody down in A&E, you were in in no time, you were rushed through”
  Unsatisfactory levels of participation	“I’m grateful but I don’t think that’s luck, being left to live like this” “if we’re having a meal out, I don’t know what to order” “I’m thinking why can’t I swallow it?” “And my favourite foods I still can’t [eat].. but I can’t taste food very well yet.” “deep down I am grateful, I just want to be back to what I was before.” “I want to be able to eat everything I want to eat. I want to be able to sing again in the choir at church.” “[I want to eat] something simple like ham and tomato toasties. Cos when we go into town and we have lunch in town that was what I used to have all the time for me... And I can’t eat bread yet proper”

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

   

  References

  1) Narrative in cancer research and policy: voice, knowledge and context (Atkinson & Rubinelli, 2012)

  2) Life‐story work in long‐term care facilities for older people: An integrative review (Doran, Noonan & Doody, 2018)

  3) Thoughts on the therapeutic use of narrative in the promotion of coping in cancer care (Carlick & Biley, 2004)

  4) Cancer Storytelling: A Study of Well-Being Expressions Made by Patients (Brown & de Jong, 2018)

  5) International Classifcation of Functioning Disability and Health (ICF). World Health Organisation, 2001.