Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Trick or Treat?

Today Rhonda Oliver of Advocacy in Barnet provides us with food for thought:

Halloween is looming – rooted in the ancient Celtic festival of Samhain, it marks the end of Summer and the harvest, and the beginning of the cold dark winter associated with human death, when the boundary between the living and the dead becomes blurred.

According to the Office of National Statistics more people die in winter than in summer and the Grim Reaper pays most house calls in December, January and February. So, if you do not want to think about death and dying, look away now!

Is there a right time to have an advance care plan? Who should have one? What should it cover?

A care plan is for anyone, with increasing relevance for older people who are likely to be nearing the end of their lives. However, it could be for someone who has particular health needs or someone who just wants to record their choices and preferences for their care and treatment for any other reason.

It is a good idea not to leave this until a crisis happens when you may not be able to participate in making choices. In an emergency health professional may have to make rapid decisions about your treatment and a care plan can help to ensure that you get the treatment that is best for you and that you would have wanted.

A care plan is created through conversations with your family and carers, your health professionals and you. You keep the plan with you and ensure that it will be available immediately in an emergency, say to ambulance crews, out-of-hours doctors, accident & emergency and other hospital staff if you are admitted. Some people keep their care plan displayed on their fridge door; others leave it inside the fridge in a plastic bag! This is often the first place an ambulance crew will look.

The plan will guide clinicians to balance the priorities for your care, i.e. would you want them to focus on treatment to prolong life or to focus mainly on providing comfort? The plan should include your choices regarding  treatments that you would want to be considered for or those you would not want, for example would you want cardiopulmonary resuscitation (CPR)? If the answer to this is no then you should flag an advance decision to refuse treatment (DNR) or any other important planning documents in the plan. It is very important that your understand the parameters and implications of an advance decision to refuse treatment and that you discuss this with your GP and family.

Talk to your local advocacy organisation if you are thinking about your future care. It will support you to make your choices and preferences heard.

Once you care plan is made it is not set in stone and should be reviewed on a regular basis. It should, however, provide you with peace of mind so you can cuddle up on the sofa with your loved ones, with a cup of tea (or something stronger), watch the telly and wait for spring.

 

Rhonda Oliver, Project Manager, Barnet Macmillan Cancer Advocacy & Advocacy in Barnet

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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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A day in the life of……..a peer volunteer advocate

Our thanks to Jill Wallace, who is a peer volunteer advocate with programme partner Advocacy in Barnet, for the following enlightening blog post:

So irritating, I have woken up so early as usual; the habit of waking as if I am going to work never seems to stop.  Priority is to feed my cat Izzie and have my first of many cups of tea and read my book before the newspaper is delivered.

Jill

Jill

There is an advocacy support meeting today which I am looking forward to as there will be quite a few new volunteers attending. I think it is such a great opportunity for the new volunteers to meet other advocates and have the opportunity to listen to the variety of work we carry out. We have a speaker at each monthly meeting and try to book other organisations working in Barnet; the information can be so useful to people that turn to Advocacy in Barnet (AiB) for support.

Very interesting support meeting ; it was very rewarding chatting to the new volunteers during our coffee break to hear that they felt relieved and happy at the level of support available to them at all times.  Today’s speaker will be of great interest to some of our clients; a family business that can offer bespoke meals delivered as and when required at a very reasonable price.

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I have arranged an initial visit accompanied by Georgia, a trainee Social Worker working with AiB as part of her training. As the meeting was from 10 – 12 am we have plenty of time for a nice lunch and chat together before our visit at 2pm at Finchley Memorial Hospital. So far I am really enjoying my day! Spent lunch with Georgia discussing how much she had enjoyed and learned from working with AiB. Hearing how this had helped her as she was coming to the end of her training was very enlightening.

We visited our client Mrs A, age 90, at Finchley Memorial Hospital.  After explaining the support AiB could offer, and obtaining signed authority to act on her behalf, Mrs A spoke of the concerns she had regarding where she would live once discharged from hospital as she was aware that she was physically unable to live independently. Happily we were able to point out that Mrs A did have choices and advocacy would be happy to liaise with all the professionals involved to ensure that her opinions and decisions are listened to.  We discussed with Mrs. A the action we would be taking on her behalf to ensure they met with her approval.

Georgia had taken notes during the meeting which ended at 3.15pm; we spent 15 minutes discussing Mrs  A’s case.

Arrived home just after 4pm having had a very varied day, bit tired but pleased.

Jill Wallace, peer volunteer advocate, Advocacy in Barnet


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Poor old Guy and his fellow conspirators would have had no need to resort to gunpowder had they had the right to free speech, freedom of thought, religion and belief, and the prohibition of torture and inhuman treatment.

Ahead of November 5th, we have a really thought provoking post from Rhonda Oliver of Barnet Macmillan Cancer Advocacy Service (Advocacy in Barnet). We hope you enjoy it as much as we did:

 

guy-fawkes

 

Remember, remember, the fifth of November

Gunpowder treason and plot

We see no reason why gunpowder treason should ever be forgot!

The fireworks are already starting near me as a prelude to the gruesome Guy Fawkes’ Day commemoration (or it could be the happier celebration of Diwali) and I tried to remember what I knew about the Gunpowder Plot. Guy Fawkes and several other conspirators plotted to blow up the Houses of Parliament to protest against the poor treatment and oppression of Catholics under the reign of King James I (James VI of Scotland) 1566-1625.

This made me think of the Human Rights Act – like you would – and its protections. Poor old Guy and his fellow conspirators  would have had no need to resort to gunpowder had they had the right to free speech, freedom of thought, religion and belief, and the prohibition of torture and inhuman treatment.

Rhonda Oliver

Rhonda Oliver

 

My grasshopper brain then leapt to the Brexiteers’ proposed “British Bill of Rights and Responsibilities” and I wondered how this might impact on advocacy – if at all?

We have had cause to consider invoking the Act in a case where someone was being pressured into leaving their home by the local authority under the “Respect for privacy and family life” provisions. In the end, sanity prevailed and the person was supported by their advocate to stay at home. I wonder whether any other Advocacy groups have had cause to use the Act to ensure that public organisations (including Government, the Police and local councils) treat everyone equally with fairness, dignity and respect? It would be great to hear about them.

We must hope that any new bill would not weaken everyone’s rights by leaving politicians of whatever stripe to decide when fundamental freedoms should apply.

 

So, holler boys, holler boys, Let the bells ring.

Holler boys, holler boys, God save the king.

 

And what shall we do with him?

Burn him!

Have you had cause to use The Human Rights Act in your advocacy practice? If so, do let us know and join the conversation.

Rhonda Oliver, Barnet Macmillan Cancer Advocacy Service 


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Advocacy on the edge

Today Rhonda Oliver of Cancer, Older People and Advocacy delivery partner Advocacy in Barnet tells us of her newfound understanding of advocacy:

I have to declare straight away that I am new to advocacy. I joined Advocacy in Barnet in May 2016 and since then have had more of a learning roller coaster than a learning curve!

barnet logoAdvocacy – it’s a funny old word and it has become clear that many people, including health professionals, do not really understand what it means. It has a faint whiff of Rumpole of the Bailey – something legal and a bit scary – but of course it is nothing of the sort and that is a big challenge we all face: to communicate better what we do. I guess this was a factor in the advocacy service in Oxfordshire re-branding itself as “Getting Heard”? Is this something we should all be considering I wonder or should we stick to our “advocacy” guns? Getting heard is only part of the advocacy story. At Advocacy in Barnet we say to the people we help “You talk, we listen, life changes” and it is life-changing aspects of our work that I find so inspiring.

Rhonda

Rhonda Oliver

The simple definition of advocacy is the act of speaking on the behalf of or in support of another person, place, or thing. So far so easy, but what I had not realised was that it would encompass so many dark and threatening sides of the human condition. All human behaviour is represented from the highest altruism to the meanest type of exploitation of vulnerable people and downright cruelty.

Some of the cases I have heard about in the last couple of months would make your hair curl – financial abuse, people being excluded from their own homes by greedy relatives, people being abused and bullied or ignored. I had no idea when I joined of the tough cases that would cross our desks.

This why I have developed so much respect and admiration for our volunteer advocates – nothing phases them. They remain professional, competent and non-judgemental at all times. Their steely determination to do the best for the people they help is amazing and nothing seems to deter them from achieving the most positive outcomes.

Volunteer advocates everywhere – I salute you.

Rhonda Oliver, Project Manager, Advocacy in Barnet


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Why I enjoy my role…

In today’s post, Edna Oni of Barnet Macmillan Advocacy Service tells us about her role:

This is a personal vocation for me and I really enjoy my job as an advocate and as a peer volunteer for the Barnet Macmillan Advocacy service. When I come across a client in difficulties, I cannot help but empathise, and giving them a voice and achieving their goals gives me great satisfaction. I feel my personal experiences makes me acutely aware of what another person is going through and strengthen my passion as a peer advocate for a positive outcome.

I feel I care more as a result of my personal experience. My own father died from lung cancer and my mother in law from breast cancer. Also, my very close friend died almost exactly a year ago.

Whilst the Cancer Older People and Advocacy work often demands a prompt outcome, sometimes it is not possible to help and one of my clients died before I was able to achieve their advocacy goals with them, which was saddening.

Edna Oni

Edna Oni

Older people are often overlooked so being able to help in different ways, e.g. with housing, court of protection,  financial abuse is rewarding.  I feel I make a difference by communicating with various organisations on their behalf. The reasons why people contact our Barnet Macmillan Advocacy Service vary enormously and sometimes there are unexpected turns. One advocacy situation with a twist comes to mind involved Mr A, who was referred from social services. He had cancer, had a mini-stroke and was admitted to hospital and then was referred to a care home for 2 weeks’ respite. He really enjoyed the activities in the home and the interactions with other residents so much so that he did not want to go home!

 

At the initial visit with Mr A and his social worker, I informed him that Social Services dictate was for his leaving the home. He refused, telling me he was not going to leave as he had broken up with his partner and there was no one to look after him. His health had improved while he was in the home and the social worker agreed. He felt that if he left his health would deteriorate and he would die. Social services were clearly more interested in funding issues whilst advocacy is completely client centred. I had to press Mr A’s case very strongly emphasising his right to a good life. Social services arranged for him to live in the home on a permanent basis and I thought job done!

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Two weeks later I received a call from social service to deal with financial abuse of the same client. His ex-partner had withdrawn over £3000 of his money from his bank account event though a block had been placed on the account. The bank was extremely unhelpful to begin with, but I persevered and eventually they admitted their mistake, refunded the money and paid compensation of £250 for his distress. Mr A was happy and so was I.

Rhonda

Rhonda Oliver

 

 

We’re delighted to welcome Rhonda Oliver to Advocacy in Barnet on May 9th as Project Manager and have our full team complement. Rhonda was previously working with Macmillan and North London Hospice as Project Manager on the Macmillan Specialist Care at Home Project. This project was designed to provide people with life-limiting conditions have more choice about how and where they received their care.


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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.

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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