Supporting People Affected by Cancer to Live Better

Moyra Mills, Annette Mawhinney,

Norma Adams, Diarmaid McAuley,

4th June 2019

The Role of the Clinical Nurse Specialist (CNS)

“It made such a difference having

someone at the end of the phone”

“I now know I am not going through this

alone”

Health & Wellbeing Events

http://www.nhsctcancerservices.hscni.net/

Aim of HWBEs:to enable people to take back control of their lives� Better informed………… � Know what’s normal……..� More confidence……… � Feel reassured…..…..� Motivated…………� Feel less anxious / isolated…….

1.30pm Arrival & Registration

1.45 pm WelcomeNorma Adams

Macmillan Information and Support Manager

1.55 pm Colorectal Cancer – What’s next?Mr Bill Campbell

Consultant Surgeon

2.15 pm Living WellAnnette Mawhinney

Macmillan Colorectal Clinical Nurse Specialist

2.35 pm What can I eat now?Heather Owen

Macmillan GI Dietitian

2.55 pm

Tea & Coffee Break

• Time to visit information stands

• Opportunity to chat to other

patients & families

Macmillan Benefits Advisor,

Macmillan Cancer Support,

Action Cancer, Cancer Focus NI, Boots, Charis,

Colostomy Assoc., Ileostomy Assoc., Bowel

Cancer UK, Physical Activity Co-ordinator

3.30 pm Support for carersClaire Campbell

NHSCT Carers Co-ordinator

3.40 pm Looking after yourselfValerie Magowan

Cancer Focus NI Counsellor

4.00 pm Managing fatigueJudith McCullough

Occupational Therapist

4.10 pm Exercise following bowel cancerJanice Allen

Specialist Physiotherapist

4.20 pm Move MoreAlan McCausland

Macmillan Move More Co-ordinator

4.35 pm Round up & CloseNorma Adams

Macmillan Information and Support Manager

Key MessagesThe new normal –what to expect /

look out for

Exercise is the magic pill to aid

recovery

How to eat well

Managing fatigue

Coping with your

diagnosis

Support forpatient/family

What people liked best about our events:

“I realise my fatigue is normal andwhat everyone else feels….and thatI can do things to improve it.”

“The reassurance and inspiration I received from the whole team. I feel much more confident moving forward. Thanks to all”

“The variety of sessions. Overall gave me an increased awareness of what my partner is going through.”

“Chatting with other people and the opportunity to chat to representatives at the information tables.”

“I know now I am not alone”

“The craic and the scones!”

75%

25%

Male Female

1% 2%5%

17%

31%28%

14%

2%

0%

10%

20%

30%

40%

63%

37%

Healthcare Referral Self Referral

11%

37%40%

12%

None Very Little Moderate A Lot

59%

12% 7% 7% 5% 10%

0%

20%

40%

60%

80% 55%

24%

11% 7%2% 1%

0%10%20%30%40%50%60%

11% 5%

37%

10% 7% 16%

40%

52%

25%

53%

12%34%

68%

32%

0%

20%

40%

60%

80%

100%

Start 3 Months 6 Months 12 Months

None Very Little Moderate A Lot

20 1916

12

0

5

10

15

20

25

Start 3 Months 6 Months 12Months

Ave

rage

FA

CIT

Sco

re

59% 62% 70% 76%

41% 38%30%

24%

0%

20%

40%

60%

80%

Start 3 Months 6 Months 12 Months

No Problems Some Problems

6070 70

83

0

20

40

60

80

100

Start 3 Months 6 Months 12 Months

Ave

rage

EQ

-VA

S

Sco

re

Increased Physical Activity Reduced Fatigue Levels

Improved Mobility Improved State of Health

Evaluation of Health & Wellbeing events

Proposed Benefits of HWBE

� Increase knowledge & understanding� Increase confidence� Improve physical wellbeing� Enable management of emotional distress� Access to range of services� Opportunity to meet others

Survey results

� 316 Postal survey in 3 Trusts

– Southern, SET, Northern

� Patients who had attended Jan-June 2018

� Mix of closed and open-ended questions

Respondents

� 131 returned (42% response rate)� 65% female

31

1811

15

4

18

Column1

BreastSkinColorectalGynaeLungUrology

Post event� 47% attended programmes or activities

23

14

8

6

38

13

0 10 20 30 40

Fatigue Management

Physical Programme

Self Management

Counselling

Complimentary

TherapiesLook Good, Feel better

Post event� 46% contacted support services

15

9

5

8

3

20

0 5 10 15 20 25

Macmillan Information & Support…

A healthcare professional

Peer support

Practical Support

Work related/employment advice

Benefits/financial/welfare advice

Changed Lifestyle Post - event

0 20 40 60 80

Social Activities

Emotional Wellbeing

Work/Life Balance

Exercise/Physical Activity

Smoking

Alcohol Intake

Diet

18

27

21

51

5

15

33

Increased Knowledge

0 20 40 60 80 100 120

More able to question or challenge…

Your ability to cope with concerns or…

More aware of the different support…

Your ability to cope with cancer related…

Confident that your ability makes your…

Comfortable in taking part in social…

Clear about what to look for in terms of…

How to access services if problems arise?

Disagree

Somewhat Agree

Agree

Thank you for listening

Any Questions?