Lightening the transport burden: how Advocacy in Barnet helped older people with cancer to attend their chemotherapy appointments

Today Rhonda Oliver of Advocacy in Barnet highlights some of the difficulties faced by those attending chemotherapy appointments:

As many older people affected by cancer will tell you, getting to and from their chemotherapy appointments can be a nightmare.

Public transport in the UK is dirty and overcrowded and people worry about picking up illnesses when their immune system is suppressed by chemotherapy. Journeys to and from Central London from the London Borough of Barnet may involve multiple bus and tube journeys. For older people affected by cancer the prospect of such journeys when they are feeling exhausted and unwell is very dispiriting and when they finally get home they are too tired to prepare a meal and eat it.

“My daughter’s main hospital is in London and parking is nigh on impossible. We are unable to use public transport owing to her condition. She has an inoperable brain tumour which causes her to have frequent seizures, making it very unsafe to use the London Underground”.

If patients are eligible for the ambulance service there is usually a long delay while the ambulance winds its way around Barnet. One of our clients said:

“We do qualify for hospital transport, but this frequently entails a 2 hour wait for our journey home and this is extremely tiring and stressful, especially as the journey itself usually takes an hour or so – depending on the traffic – and whether or not there are any other pick-ups/drop offs en route”.

Many patients feel too unwell to drive themselves and may have to rely on friends and family to drive them to their appointments. Parking is often difficult to find and the parking fees may be prohibitively expensive. There is also the stress of worrying about an appointment over-running time, with the prospect of a parking fine to add to the misery.

So how was Advocacy in Barnet able to help to reduce the burden of transport on these patients? It did so as the result of an extremely generous grant from Barnet CancerLink, a local non-medical Barnet charity. This grant enabled us to work with two local taxi companies to provide a free taxi service for patients to and from chemotherapy and related cancer medical appointments. The grant also enabled us to provide a cooked meal on request when people were too exhausted to cook after their appointments.

We were able to help 100 people affected by 22 different types of cancer: 53 females aged 25-84 and 47 males aged 51-82. Some people had multiple return journeys.

“Being able to book a cab, which will turn up to collect us in a very reasonable time and which is just for ourselves, makes a huge difference to our day. My daughter is much more relaxed which has a direct effect on the number of seizures she has”.

“This last week alone, my husband went back and forth to Barnet General on Monday, Tuesday, Wednesday and Thursday. The total cost to him was £72. The outlay since August last year would have exceeded £2000 had it not been for Advocacy in Barnet and some wonderful neighbours”.

The grant took effect from December 2016 until June 2017, when the grant was exhausted. We are very grateful to CancerLink Barnet for enabling us to demonstrate that people living with cancer are in desperate need of help with their transport needs and to show its impact on cancer patients in Barnet.

Rhonda Oliver, Project Manager, Barnet Macmillan Cancer Advocacy.

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The fact that she was confident to say ‘no’ made me realise that as an advocate my job was complete

Mike’s Story, recently released on OPAAL’s YouTube channel highlights some of the many issues advocates support older people affected by cancer with.  Mike talks about the impact of his cancer diagnosis, how his life was taken over by the thought of cancer and how things changed for him when he was introduced to Bob, his volunteer peer advocate.  This story was produced under our Older People’s Cancer Voices work programme, and we have been identifying other stories for future filming.

Today we have a related post written by Aneesah Bana, the Cancer, Older People and Advocacy project advocate from delivery partner ICANN. Aneesah tells us about working with a client who was considering being the subject of one of our Older People’s Cancer Voices films:

When I was approached by OPAAL to identify a client that would be willing to participate in making a short film about their personal ‘cancer journey’ and how advocacy support facilitated them I initially thought I had the ‘ideal’ client who not only made profound changes to her life but was truly inspiring as a person who in the face of various adversities continued to not only remain positive but actually viewed her cancer diagnosis as a ‘blessing in disguise’.

Prior to diagnosis my client led a life that could be described as emotionally and physically chaotic. This started from childhood where she was the youngest from a family of six children. Events beyond my clients control were to shape and mould her childhood and many years into her adult life.

My client’s mother had abandoned her family when she was a child. With a physically and sexually abusive father my client grew up in an environment where neglect and mistreatment became the norm. These early childhood experiences were followed into early adult life as my client went into one abusive relationship to the next. To cope with the continuous emotional trauma ‘x’ became heavily dependent on alcohol and was also a heavy smoker.

I met ‘x’ as an advocate as she was diagnosed with throat and mouth cancer. At the point of meeting ‘x’ had given up alcohol and was successful at stopping smoking. Although my first meeting was to assist her during a DWP meeting I was genuinely intrigued at what prompted her change in lifestyle as my own previous employment role was in child protection and very rarely did I come across individuals who not only had a very clear insight of their problems but could identify the cycle of abuse and how she was able to stop this.

Although my support with ‘x’ began on a more practical level where I aided her with benefits and appointments this moved on to something far more deep rooted as various dormant and repressed emotional issues came to surface.

‘X’ recognised that her choice in lifestyle was a direct result of severe early childhood trauma. When she was diagnosed with cancer many of these supressed feelings emerged. Consequently she would often tell me of experiencing vivid nightmares and flashbacks of what had happened. I was able to get ‘x’ specialist counselling which dealt with people who were diagnosed with cancer as they also recognised that it was not unusual for people diagnosed to resurface repressed emotional hardships when diagnosed and particularly once treatment has ended.

Over the course of a few months ‘x’ attended the sessions and the changes to her mental attitude were very apparent to see.

We often discussed how throughout life she was not able to recognise that it was healthy to have boundaries, particularly in intimate relationships but also with her own children. As over the years her relationship with her children also became strained as she felt that they too would on occasions manipulate her emotionally. Ultimately ‘x’ discovered that at times it is actually better to say ‘no’ to situations that inherently made her feel uncomfortable.

With these new found healthier boundaries however came more difficulties as she began to put them into place with her own children. Although ‘x’ faced this new difficulty she sincerely acknowledged that they were necessary.

The healthier emotional change also to a certain degree instigated a physical transformation. Where she once again started to take care of her herself and her appearance.

Due to these changes I initially felt that she herself would sincerely benefit by participating in the film. I was of the opinion that ‘x’ could not only visually see how far she had come but hopefully inspire others who are going through a similar experience.

Initially when I asked ‘x’ if she would like to participate in the film she was excited at the prospect and consequently I arranged a meeting with Justin the film maker.

Aneesah

At the meeting we discussed various issues and ‘x’ was very open about her experiences and how I as an advocate aided her. Throughout the discussion ‘x’ was very complimentary of the advocacy service and it was only after the meeting that I was able to help ‘x’ recognise that the changes actually came and were directed from her and I was able to merely facilitate them. Ultimately after the group meeting when I spoke to ‘x’ there was a sense of genuine self-acknowledgement at how far she had come.

Unfortunately soon after ‘x’ decided that she did not want to participate in the film citing that she was not comfortable and that she recognised that her privacy was important.

The old ‘x’ would have been to uncomfortable and would have attempted to appease myself and Justin in fear not to offend or inconvenience anyone by going along , when deep down it’s not what she would have wanted.

Ironically it is just the fact that she was confident to say ‘no’ to the film that made me realise that as an advocate my job was somewhat complete as her privacy was a ‘boundary’ and the new ‘x’ confidently put it into place!

Aneesah Bana, ICANN

Friendships forged through advocacy

In today’s post, Valerie McGregor advocate at delivery partner Knowsley Pensioners’ Advocacy Information Service (KPAIS) ponders the relationships we build whilst delivering advocacy support:

Having recently revisited some of the cases of older people affected by cancer who received support through advocacy, it became apparent that not only did we have a professional relationship as advocate and client whilst dealing with their issues, but also that during their journey we had become friends.

What I didn’t envisage was that through supporting them, I would get to know them so well. In so many cases I’ve learned about their lives from an early age, where they grew up and all about their families. I love to hear about and feel privileged to hear their stories, and how their cancer journey has affected them and their loved ones. 

Valerie McGregor

 

I have found that as an advocate, and especially whilst dealing with older people affected by cancer, it becomes apparent that very often, the client will minimise their issue and I hear them say they they feel there is someone else more in need of this service.  The joy of this service is that we do have the time to spend in getting to know people, and giving them as much time as they need to identify the areas they would most benefit from some help. In this getting to know each other period, it really can begin to feel like chatting with old friends.

 

It’s always good to hear positive feedback about the Cancer, Older People and Advocacy project and the service it provides, but it’s also good to know that having an advocate has been so helpful, that we are now regarded as friends.  It’s clear that being there to listen or to talk things through can make such a big difference.

So many of the people who have accessed this service have said that they feel they have a friend for life which I find so humbling that I have been able to make such a positive impact.

Valerie McGregor KPAIS

“Knowing there is someone out there I can call and help me when it all gets a bit much is priceless, truly and utterly priceless..”

Today we hear from Alan (not his real name) who has been receiving peer advocacy support from delivery partner Age Connects Cardiff & the Vale

I am a 76 year old gentleman who has recently started receiving support from the Cancer Older People and Advocacy project. To say I was in a bit of a state is an understatement.  Sadly my wife passed away in December from a brain tumour, to which we knew nothing about.  My wife and I were also carers for our grandson who had learning difficulties and he also had cancer, sadly he too passed away very suddenly in March.  My life has in a matter of months, been turned upside down and ripped apart.  I have limited family that live close by, so I’ve been struggling with how to cope and deal with the day to day issues of life.  I am also awaiting an operation myself for a knee and hip replacement and am in a great deal of pain.

My Social Worker was the one who learnt about the Cancer, Advocacy and Older People’s Project and suggested we ask for some support.  I was reluctant at first as it meant explaining my pain to someone all over again, but I knew I really needed help and my Social Worker, however lovely she was, had very limited time.  I met a really nice gentleman from the Cancer Older People and Advocacy team who was a volunteer.  He was able to assist me with the mountain of paperwork I had accumulated, as this was really getting on top of me and the debt letters were beginning to come in.  He also assisted me with the practical things such as where and who I could donate my wife and grandson’s belongings.  He was someone to chat to also, someone independent who didn’t judge, he just listened and understood my pain. 

He also accompanied me to hospital appointments about my own health which was hugely supportive.  After being a carer for so many years, all of a sudden being alone is a huge shock and adjustment. 

I continue to receive support as I still have a mountainous pile of paperwork, again! But knowing there is someone out there I can call and help me when it all gets a bit much is priceless, truly and utterly priceless.

If you know someone who might benefit from peer advocacy support why not check out if we’re delivering services in your area by clicking here. Do get in touch.

Angela Jones, Age Connects Cardiff & the Vale

Driver, moral support or something more?

Kathleen Gillett from Dorset Macmillan Advocacy looks at what an advocate can and will do to support an older person affected by cancer:

When I explained to someone recently that peer volunteer advocates could accompany the person they are supporting to medical appointments they remarked ‘Like a befriender then?’ ‘Yes and no’, I replied.

The advocate, in addition to walking in the door with the patient (and carer) can do any or all of the following:

• Ensure the person has remembered the appointment, has satisfactory transport arrangements and knows exactly where to go
• Ensure the person knows what the appointment is for and who they are going to see
• Ensure the person has thought about the previous appointment and prepared for this one by thinking about what they would like to get out of it and writing down any questions they would like to ask
• Prompt the person to ask questions they have prepared and, if needed, ask the questions on the patient’s behalf
• Monitor the person’s understanding of any terminology used and ask them if they would like fuller explanations
• If the person is asked to make a decision about treatment options check whether they feel ready to do so and if not how much time is available
• Take notes during the appointment to make a written record for the person to refer back to later
• Make sure the person is clear at the end of the appointment what the next step will be
• Have a cup of tea while waiting for transport home
• Later on run through what happened at the appointment to see how the person feels it went, whether they felt comfortable and were treated with dignity and respect
• Discuss any treatment and care options and their implications and whether more clinical information is needed
• Agree with the person if any new and immediate needs have arisen and what they would like to do next.

I was reminded of reading Ken Worpole’s obituary of the hospice architect, Ian Clarke. Clarke ‘believed passionately that hospitals for the dying should be welcoming, reassuring places and he spent his career designing uplifting spaces for palliative care’.  Clarke wrote of healthcare environments; ‘Why can we not get away from the ubiquitous ‘no-place’ hospital corridors that we are so used to?’

 

I agree that environment is important and have visited well designed hospices and cancer centres that clearly enhance wellbeing. However, for me when I go for the first time to a new place or have an appointment of significance in a familiar place, feeling well prepared and having a trusted person to go with me is equally important. This, coupled with the friendliness and manner of the staff that I meet there, will make a bigger impact on me than the surroundings in isolation.

Kathleen Gillett, Dorset Macmillan Advocacy

Advocates relish in the words “not possible”

Lizzie Sturm gives us the low down on what’s been happening recently at project partner Advocacy in Barnet:

We seem to be spending so much time recruiting! The last two months have seen us interview for a Volunteer and Training Co-ordinator, a Project Manager as well as Volunteers for the Barnet Macmillan Advocacy Project. I hope that people will get to meet Tasneem Goheer, the new Volunteer and Training Co-ordinator who started at the beginning of January over the next few months. The calibre, passion and dedication of volunteers that join us never fails to humble me.

As a Macmillan partner, we positively benefit from both the learning of COPA projects sharing their experiences at Board meetings as well as directly receiving the support and training of Macmillan. We had our “induction” last week with the Macmillan Involvement Coordinator Raj Bhattacharjee, informing us of what we can access as well as their expectations.  All staff on the Barnet Macmillan Advocacy Project will be attending their formal new professionals’ induction day in due course. We’ve also been introduced through OPAAL to our mentor organisation Dorset Advocacy, a really brilliant idea.

Despite the changes, Barnet Macmillan Advocacy Project is making a difference and the relief that advocates can offer is palpable. However, so many of the issues that we have dealt with can end up being a race against time. Betty Zulu is the Barnet Macmillan Senior Advocate currently supporting Mr P, who has terminal cancer (final stages) with housing issues. His wish is to transfer the tenancy in his name over to his children as he is very worried about leaving them homeless. The housing department are of course adamant that it is not possible to transfer tenancy to children. Advocates relish in the words “not possible” and Betty has been combing through tenancy and transfer laws to challenge this. Mr P has already noted the difference at the housing department since informing them he has an advocate. Betty has now identified that transfer to children living at home can be allowed so a positive resolution and peace of mind to Mr P is on the horizon. We hope that this will be completed within his lifetime. Betty says “I found it very important to provide support to Mr P as his health is quickly deteriorating. He was becoming very breathless even as we spoke. His prognosis is not very good. I feel very gratified that I am able to provide support for Mr P as he informed me that he had been to so many other organisations but unable to get any help”.

Lizzie Sturm, Advocacy in Barnet

“..supporting older people with cancer across a spectrum of issues..”

In this post Lizzie Sturm, Chief Executive of Advocacy in Barnet, explains what it has been like becoming involved in the Cancer, Older People and Advocacy Programme funded regionally by Macmillan Cancer Support:

Advocacy in Barnet has just reached its’ sixth month milestone; becoming a Macmillan partner in May this year. As a team we have been actively and widely promoting the project.

Volunteers Sarah Humphreys and Nicholas Johnson carrying out mock interviews

Volunteers Janet Maddison and Ian Lanman

 

Having previously heard of the range of challenges faced by the Cancer, Older People and Advocacy projects at the Cancer, Older People and Advocacy National Board Meetings we were prepared for a myriad of scenarios. Happily, I can instead say the project has been building smoothly in terms of delivery and awareness raising. 8 volunteers have been recruited, trained and actively providing advocacy. As a Macmillan partner organisation, we are privileged to be able to take advantage of the training programme they run with 3 of the new volunteers attending Macmillan’s Cancer Awareness Face to Face training.

 

 

Our soft launch held last month was successful with guest speakers from Barnet Macmillan Citizens Advice project, Cancer Research UK and Macmillan.

We have held two Local Cancer Champions Board meetings comprising 11 members including local Macmillan services, Macmillan GP lead, North London Hospice, Barnet CCG, Barnet Macmillan Citizens Advice project and a volunteer advocate.

 

We have to date received 8 requests through a range of routes and are supporting older people with cancer across a spectrum of issues including financial, social care, practical support, housing and moving into care. In one situation, advocates are supporting a couple both affected by cancer and in their late 60s, going through the most difficult period both emotionally and physically. The Macmillan Cancer Support Volunteer Advocate is supporting the husband who also has dementia in settling-in in the nursing home and liaising with the nursing home and sheltered accommodation regarding moving his belongings; the Macmillan Paid Advocate is supporting the wife with terminal cancer with her End of Life Care wishes and her move from the hospital to the nursing home where the husband has moved. This couple has no relatives and friends to support them and cases like this highlight the importance of Barnet Macmillan Cancer Advocacy services.

Cyril Dainow with an Older Person Affected by Cancer from Macmillan Engagement Event

The challenge in this project has unexpectedly been the need to re-recruit for the volunteer co-ordinator role but with interim cover for this position, there has been no disruption to this fantastic service.

Lizzie Sturm, Advocacy in Barnet

In conversation with Malcolm

I recently had the privilege of speaking with Malcolm Orgee, a 54 year old in full time employment with a young family. Malcolm is one of the people affected by cancer that our independent advocacy service supports.

After suffering frequent and disabling headaches for six years Malcolm was finally diagnosed with CLL, Chronic Lymphocytic Leukaemia in January 2013. Malcolm remembers the day of his diagnosis vividly, describing to me the weather, cold clear snowy day, the drive to hospital and conversation with his consultant. He was told he had probably had CLL for six years and given a prognosis of a further seven years.

Malcolm described the news as being an ‘absolute bombshell’. His immediate thoughts turned to his family, his partner and two young children. How was he to tell them?

Thankfully they proved to be very supportive, however living with this condition meant he did not want this to dominate family life, he recognised he needed support from outside his family.

Many people are affected in this way, they have a strong urge to protect family members from the worst of their fears and concerns and often need to share these with someone outside the family.

After many tests and visits to Dorset County Hospital he asked his nurse if there was any support available for him. He was told no not really, he didn’t feel the nurse was very effective. Eventually he called Macmillan Cancer Support who gave him the number of the Cancer Older People Advocacy service at Help & Care Bournemouth.

Six months after his diagnosis Malcolm was introduced to Bob Smith. Bob was to become Malcolm’s advocate. The advocacy service go to great pains to match people needing support with Advocates who themselves have had similar cancer experiences. Bob had previously had Mantle Cell Lymphoma and was able to understand Malcolm’s condition from the word go.

Malcolm was struggling with the bewildering array of information relating to his condition and trying to cope with the emotional effects of his diagnosis whilst grappling with the need to inform his employer of his new situation.

Malcolm works as a Head Gardener on a private estate in Dorset, he loves his work and wants to maintain his position. He is thankful he has supportive colleagues and employers. Nonetheless he has concerns as to what the future might bring for himself and his family.

LMalcolm was placed on a ‘watch and wait’ programme, meaning no immediate treatment was offered. This proved difficult for some members of his family to understand, particularly his elderly mother who constantly asks Malcolm when he is going to be offered treatment.
Malcolm finds it difficult to have to repeatedly explain the ‘watch and wait programme’ to his 81 year old Mum.

For two and a half years Malcolm has lived with quarterly hospital visits, monitoring his condition. For two of these years he has been supported by Bob, an Independent Peer Advocate. Bob has been there for Malcolm whenever he has needed him.

Asked to describe his advocacy support to me Malcolm said “I have been massively supported by Bob, he understands my cancer as his own cancer has many parallels. Bob knows what I am going through and has been there for me every step of the way. He understands all the emotional ups and downs, the complexity of my cancer, the day to day practicalities I live with, the whole scenario”.

He also told me he is constantly amazed by Bob’s dedication, always being there for me, particularly as Bob is a volunteer advocate

Malcolm feels this service is absolutely essential and should be available for all those who need it. He wishes he’d met Bob before he was diagnosed for then he would have had all the support he needed from the outset.

Malcolm recommends this highly personal and confidential service to all, he knows he would not have managed so well without Bob’s support.

I am deeply grateful to Bob Smith and all our wonderfully dedicated volunteers. They freely give not only their time, but bring valuable personal experience of their own to share with and inform their relationship with all those they support.

Bob like his many colleagues has spent a lot of time in training, and being supported by professional paid advocates. He has also contributed to the volunteer team’s experience helping to make our Dorset Advocacy Service one in which we can be very proud.

I’d like to offer my personal thanks to Malcolm for sharing his story, he understands our need to capture his and other’s such stories in our attempts to convince others of the value of our work to those who desperately need advocacy support.

Kath Parson, OPAAL Chief Executive

Jim and Edith: They love their new flat

Val McGregor, advocate from KPAIS (Knowsley Pensioners’ Advocacy Information Service) tells us about the difference having advocacy support has made to Jim and Edith.

As a cancer advocate I have had a number of very positive outcomes.

I’d like to share this one with you.

When first introduced, Jim and Edith explained to me all the difficulties they were facing since Jim’s diagnosis of cancer several years earlier and how it had impacted on their lives and the impracticalities of their present housing. Jim was having to bathe at his local leisure centre as this wasn’t practical at home.

When Jim was having a bad day and unable to get out of bed, his wife was constantly having to go up and down the stairs, and as she has poor health herself this was really taking its toll on her. They both decided that alternative accommodation was necessary. 

On their behalf I applied for extra care accommodation were they are still able live independently but have the security of added support.  I attended a panel review on their behalf to state their case and they were subsequently offered a well equipped spacious, modern flat.

Jim and Edith moved into their new flat just in time for Christmas 2014.

They love their new flat and the amenities of an onsite restaurant and hairdresser.

They are now socialising more and their future is much brighter.

Val McGregor

 

 

Jim and Edith have given us very positive feedback and said that they would have been unable to do this without the support of the cancer older people and advocacy project and how valuable this service is, when people are dealing with the effects of cancer on a daily basis.

If you are affected by cancer and would like to know more about advocacy support then do let us know.

Are you an older person affected by cancer living in one of our delivery areas? Would you like to train to be a peer advocate? If so get in touch.

Timely advocacy support to elderly gentleman in Sefton

I have been visiting an 87 year old man who was living in sheltered accommodation with his wife who has dementia.   When we received the referral the gentleman was waiting to undergo tests to confirm that he had cancer.  He was very concerned about how he would be able to cope with the frequent hospital appointments that a diagnosis would bring and with the deterioration in his wife’s ability to perform daily activities.  The gentleman had contacted social services himself but there hadn’t been any contact from them at this point.  This caused him to worry about his wife’s care as well as the uncertainty of his own condition.

I offered to liaise with social services on his behalf and I was able to ensure that a care package was put in place.  Through the networks that we had established whilst promoting the Cancer Advocacy Project I was able to make him aware of services which could offer him support and could support him in his role as a carer.

The gentleman later decided to request respite care for his wife as the frequency of his appointments meant he would be away on a daily basis.  During a phone conversation he expressed concern that the respite placement would end during the main body of his treatment.  Once again I contacted social services to ensure that arrangements were in place to care for his wife for as long as needed.

In addition to this I was able to supply the gentleman with information about services that could support him emotionally or practically as he told me he was concerned about his own needs in the future.