The volunteers who have shared their stories in Time: Our Gift to You come from all walks of life but I felt it was significant that several were retired Health or Social Care Professionals. I wanted to know more about what motivates them to train as an advocate so I asked Mike Goodman, a newly retired Clinical Nurse Specialist who joined Dorset Macmillan Advocacy last year, why he volunteers and what he feels former Health Professionals in particular can bring to the role. Kathleen Gillett, Coordinator, Dorset Macmillan Advocacy
‘I was interested in becoming an advocate because, despite being retired, I still have an interest in helping people live with and recover from a diagnosis of cancer. After many years as a health professional you do build up a wealth of expertise and numerous medical contacts which it seems a waste to suddenly abandon just because you retire. The transition from professional to volunteer is a tricky one and it can be rather easy to slip back into a formal or professional approach to a situation rather than acting and speaking as a lay person – or simply imagining being the patient. However empathetic professionals think they are, because they have been trained/educated and because they are busy they quickly slip into “professional” mode and forget just what it is like being a confused, slightly scared, often lonely recipient of health care services.
I am sure advocates can be effective whether they have been cancer patients themselves, or have been the carer of someone with cancer or have been health care professionals. All those experiences will enable you to be a help and support. They would all bring different skills and abilities to the many and varied problems that the cancer partner is grappling with. Probably the greatest skill lies with the Macmillan Senior Advocate or Volunteer Coordinator in choosing which advocate to link up with each new partner.
Health Care professionals do have the ability to understand how the wheels turn in a hospital department or what a GP really needs to know in order to change the experience for a patient who is in a crisis. They will understand that it is hard to get something done on a Friday afternoon when most departments in a hospital are winding down for the weekend or that a referral between teams will have to go through an MDT meeting before a decision is made. Explaining that there is no simple blood test or screening process for some cancers comes as a shock to some people in the community who are reading the tabloids and grasping at every tiny news item that has the word cancer in its headline.
Retired professionals can play an important role in advocacy but, at the end of the day, it is that human touch, that word of encouragement, that listening ear that every person affected by cancer needs and wants and that is a role that every advocate seeks to fulfil.’
Today, with kind permission, we reproduce a post written by Chris Lewis a good friend of our Cancer, Older People and Advocacy work and first published on his own blog recently:
The work that I do in cancer support has changed dramatically over the years, and I have had to adjust with the increase of demand on my time. My speaking engagements and charity take a bulk of my time now, with writing filling any gaps. But one thing I was determined to continue with is my monthly prostate group facilitation, which I have been doing now for 8 years. This is done at my local cancer centre and we have a group of approximately 30, with new members every month. We have professionals from the local community as guest speakers and everyone shares their experiences to try and improve the offer for patients coming into the system now.Our members come from a very local area and in general visit the same few GPs and mainly three hospitals for their treatment.
But what continually shocks me is the mixed messages being brought back to the group. There is a huge amount of experience amongst our members which is why the group is busy. Most have learned to be proactive with their own care because they have to be! The guys are a great cross section of prostate treatment with some starting, and others dealing with the side effects of their treatment. This particular cancer has many different options of treatment with different outcomes of course. All have different side effects, and for most people, making a choice is one of the most difficult things they will have to do.
Of course, everyone is affected differently, even when two people have the same disease and treatment which we all know. Treatment is changing rapidly now and even in my time of working with the group, surgery is now being done by robotics, and radiotherapy has become much better targeted to leave less peripheral nerve damage. This is progress of course, along with the more tolerated drugs etc, but why am I not shouting from the roof tops? Simply because our communication is still as poor as ever. With this particular cancer, the treatment decisions can be complex, but it is after treatment where the complications can really begin. Some of the basics of life for men, being embarrassingly difficult. Unable to control accurately when you need to go to the toilet, and wearing nappies, in case of accidents. Erectile dysfunction being also very common for many, after treatment. Having to take hormone therapy for several years, changing your physical appearance, getting regular hot sweats and growing breasts. You can’t begin to imagine those sort of changes can you?
However there are many things around now that can improve life after prostate cancer, but it certainly is a lottery whether you are told about them or not! Many of them are available on the N.H.S, but it seems very few are actually informed what is available. A quick example would be the pads that men wear. People spend a lot in supermarkets buying their own but apparently there is service that delivers them free of charge. Some people know about it and others don’t. The same applies for problem with erectile dysfunction. Tablets, machines, pumps and under the skin valves are all available, but so many people are just not aware much of this exists. It is so strange listening to the group sharing their own experiences. Many looking on in amazement as one mentions a service that nobody else was aware of. Why is this still happening in this day and age?
My initial thought was cost, as that is always one of the first things mentioned, but maybe that is the cynic in me?How can it be that people living in the same area attending few hospitals get very contrasting information? Not being told some of the key elements of what might actually improve their physical and emotional wellbeing. This really shows why it is important for patients to talk to each other and the value of support groups whether online or physical. I have always been proactive with my own treatment and encourage others to be the same. But let’s be honest at the time you are feeling most vulnerable it can be difficult to be ‘pushy.’
We are doing some wonderful things now for people affected by prostate cancer, but what I have learned is that like with most other cancers, it’s the psychological and emotional issues that follow, is where the biggest problems are.Why oh why is it still so ‘hit and miss’ that people get the treatment they require? Whether you have a particular urological nurse or not? If you see a certain Consultant or you don’t?
Communication is still the major obstacle to helping these people. Despite the Internet, and information from many different charities and the health service, it is just not being delivered in the right way. Leaving people to their own devices after they have had traumatic treatment will not help them with their quality of life. Surely after they have been treated, they deserve the best opportunity of returning to as normal a life as can be achieved? It is no longer good enough to think the job has been completed once you leave the hospital. The after effects of many of these treatments can continue for years after, and sometimes for life. We must do more to ensure that each case is looked at individually, how that person lived their life before and what ambitions they may have for after.
In my opinion we must make every effort to improve the quality of life after treatment for people affected by cancer. Not having the services available is one thing but for them to exist and people who need them not to know about them is a disgrace. My experience has shown me that there are still too many ‘cooks’ without real effective collaboration. It can no longer be a matter of luck whether we find what we need!!
This video will help explain some of the issues that people can face.
As always I have share my thoughts and experiences above, and please feel free to share your below. It’s your help that gives me the information I need to ensure positive change can happen.
I attended an event organised by the local hospital trust in conjunction with Macmillan called ‘In Your Shoes’. Advertisements had been placed in the local press and online inviting patients, former patients and carers to attend. Pre-registration had been encouraged as the format of the day was for primary and secondary care staff to listen to each patients experience on a one to one basis and record the positive and negative aspects of their care. The staff who attended were predominantly not dressed in uniform, had not been involved in the individual’s care and were from a range of disciplines.
Following the one to one discussion the listeners then read out the positive and negative comments. There were many positive comments about the individual communication from all members of the multi-disciplinary team. However there was criticism about the inconsistency within the service between oncology and the general hospital. Many people had experienced problems with their GP not being kept up-to-date with the treatment and the patients or their carer’s were unsure where to seek the appropriate medical help. There was a suggestion that there should be an individual who could coordinate all the treatment and be a point of liaison or alternatively that patients could be issued with hand held notes to avoid the need to repeat their medical history. Another carer felt that a letter from the GP explaining the full situation would have improved their journey through A and E.
Helen Vernon, Sefton Pensioners’ Advocacy Centre
There was a general agreement that there was a marked difference between the regional cancer hospital and the local hospital. The older patients felt that they had had a significantly inferior experience on the general wards where staff were more likely to be rushed, have a more negative attitude with regard to prognosis and treatment options and display less empathy. This became one of the most significant outcomes of the listening event and the organisers intend to take this information back to the hospital board for consideration.
Those present felt that the disjointed care continued when they left hospital and that there was a lack of awareness of the correct protocols for care by the district nurses.
There were several comments made which were particularly relevant to the advocacy project.
Some attendees felt that there was very limited or no information about benefits, local support or other services in the area
Alternatively others were given this information but not at an early stage
On a number of occasions the diagnosis was given to the patient whilst they were on their own
One individual mentioned that they felt that patient’s decisions about treatment should be respected and that they should not frequently be asked if they wanted to change their mind
Treatment options on the elderly care ward were limited as it was felt that the staff were dismissing them because they had a cancer diagnosis
A local Macmillan Involvement Officer attended the event to coordinate feedback and she spoke to the larger group about our Cancer, Older People and Advocacy project. She was able to link a number of the points highlighted back to our cancer advocacy service which was helpful and positive.
Helen Vernon, Advocate, Sefton Pensioners’ Advocacy Centre
Yesterday I took part in a Department of Health led webinar. Now a webinar, for those of you who’ve never heard of it, is when people log into their computers from across the country and take part in a presentation/learning event remotely. I had to access my computer then use my phone to call in so I could contribute verbally if necessary. Yesterday’s webinar was a learning event about Joint Strategic Needs Assessments (JSNA) and how the voluntary sector could work with local authorities to get the voices of local people heard. Now that might sound quite dry but actually it was really interesting.
What was really, and unexpectedly, lovely about yesterday was that I could see the names of the others around the country who were also taking part and discovered that a very good friend of mine who lives over 250 miles away from me was also taking part. It made me feel really close to her. What struck me was that I was sitting working at home and so was she. We laughed privately about the fact that we could work in our PJ’s if we wanted to and no-one would ever know. Personally I draw the line at not getting dressed but it is nice to work with your slippers on…
Working from home has many advantages but also has drawbacks and the main drawback is isolation; no-one to talk to. So to get involved in yesterday’s webinar was really nice as for 2 hours I had almost 100 people with me while I worked. That’s when I got to thinking about our cancer advocacy service.
Our project advocates support older people affected by cancer on an ongoing basis. They provide a link between the older person and the rest of the world, a bit like that webinar did for me yesterday. They reduce the isolation of the older person by being there for them and ensure that lines of communication are open and that, like me yesterday, they can “call in” to the advocacy service and thereby be heard.
It’s wonderful to be a small part of a service which gives so much and I look forward to seeing our project develop over time into an asset that no local community feels it can afford to be without. Oh, and that’s where the webinar comes in again since it gave me an opportunity to think about how we can get local cancer advocacy services involved in their own local Joint Strategic Needs Assessments.