Often patients have no-one or family are too closely involved and frightened themselves..

Many thanks to Sue from Knowsley Pensioners Advocacy Information Service (KPAIS) for today’s very personal account of a cancer diagnosis:

When I started work, as Administrator on our Cancer, Older People And Advocacy project in 2014, never did I imagine I could end as a possible service user!

In April last year, after a routine mammogram, I was diagnosed with breast cancer.  To say your world turns upside down is an understatement!  A lumpectomy and course of radiotherapy followed fairly quickly afterwards.

Sue

Immediately, after the diagnosis, I actually felt a sense of relief. During that interim period, your imagination plays havoc with you and you imagine all sorts of horrid possibilities.  But apart from them saying ‘we got it all wrong Sue’, the prognosis I received was most likely the best I could have hoped for. However, my partner was devastated – he’d lost his wife to breast cancer many years ago. But he came up trumps and became my ‘brick’ throughout my journey.

I had a supportive partner and family around me – someone to confide my fears in and to accompany me to the many hospital appointments but it made me realise the importance of the Cancer, Older People And Advocacy project, having someone there just for you, to speak up for you, sort things out for you, to talk to when you’re frightened, listen to what the professionals are saying.  Often patients have no-one or family are too closely involved and frightened themselves. An independent Advocate can make all the difference.

Sue, KPAIS

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Advocacy is a serious business …

Today Pat McCarthy from KPAIS tells us about Advocafe:

Advocacy is a serious business…..

Except when it’s not!

Here at KPAIS we have been trialling a new initiative for older people in Knowsley.  We’ve called it Advocafe. It’s a way of getting older people together in a social setting to encourage peer advocacy and peer support. Ideal for our Cancer, Older People and Advocacy project.

So, over a cup of tea and a French Fancy we’ve shared information on advocacy services and health prevention ideas.  And we’ve asked all the people who attended what was important to them.  What do they want information about?  What would they like to see in these sessions?

Within 2 weeks new friendships had been formed, lifts were being given, wool was being shared.  And we were gathering really useful information about what older people wanted themselves.

Within our sessions we had all the information available about our Cancer Older People and Advocacy Service with the Every Step of the Way Books.  One woman told us about an experience she’d had many years earlier after a cancer diagnosis “I could have used someone like you back then!”  She was happy to share her experience with her table and she helped others to understand how the Cancer Older People and Advocacy service can help when you feel you need support.

One of our sessions brought in the cancer screening officer and it was so much easier to talk about bowel screening while we were all together, having a laugh, making it less embarrassing (one of the key reasons why people don’t talk about it).  And at another session we brought in the Ivan – Knowsley’s own cancer information bus.  Blood pressures were taken, advice was given and people felt supported and reassured that they could access this information.

We made Christmas cards (nothing like being prepared …) and gift boxes. This session was wittily titled ‘Advocrafts’ by one of our Sandwell colleagues!

We made advocacy approachable and we’re now looking forward to taking our Advocafe out to the rest of Knowsley later in the year, with a steering group formed of our first attendees.  It’s such a good vehicle for taking our Peer Cancer Advocacy out into the community and hopefully reaching a wider group of older people.

Pat McCarthy, KPAIS, April 2016

Specialist cancer advocacy support is invaluable, even for those with family and friends…

In this post Valerie McGregor, advocate at KPAIS (Knowsley Pensioners Advocacy Information Service), tells us why it’s important that every older person affected by cancer has access to advocacy support if they want it, even those with family and friends around them:

I have recently had the pleasure of supporting a lovely lady who I shall refer to as Jane. Jane self referred into our service when she felt that she needed someone to talk to outside of her family.  Although Jane has a very loving and caring family and who are supporting her through her cancer experience, she didn’t want to burden them as they didn’t want to talk about practical matters arising from her diagnosis and prognosis.

Our first telephone conversation was about practical issues like benefits and how we could support her with form filling and making a claim, as well as information on other services which could offer practical support. I visited Jane at home to do her form and we had a long chat about everything that was important to her and what she wanted. Jane had said how nice it was to discuss matters without burdening her family.

 

Jane was very optimistic about her illness and the options available to her, but unfortunately Jane wasn’t able to have the surgery that was first discussed. As a result she now wants to put her affairs in order and generally wanted to talk about how she felt about what was happening to her, and what support we could offer her with general practicalities.

 

Jane has expressed her sincere thanks for the practical and emotional support we provided and how having a Cancer. Older People and Advocacy advocate has helped her to stay independent and in control, and asked that I stay in touch with her and visit her frequently just to have a chat and a cup of tea.

Valerie McGregor, KPAIS

A visit to Willowbrook Hospice

Pat McCarthy, manager of the Cancer, Older People and Advocacy service at Knowsley Pensioners Advocacy & Information Service (KPAIS) tells us about a recent visit to Willowbrook Hospice:

As part of our delivery of the Cancer, Older People and Advocacy project we have worked hard to get to know other services in our area and to develop some great working links.

As part of this work we were invited to visit Willowbrook Hospice.  If you have a look at their website you can learn a lot more about the fabulous work that they do http://www.willowbrook.org.uk/

Myself and Val, who is our paid advocate, were able to attend this visit and it was so helpful to have an understanding of this great facility available in our area.  We met with Jane Finnerty who is the outreach services manager and we had a tour from Margaret McConaghy the inpatient services manager.

The day we attended, an outreach session was underway with many people attending to access clinics, to take advantage of therapies and to socialise.  There was lots of noise and laughter and we could see what a valuable space this is for people to be able to share their thoughts.

Margaret showed us around all of the hospice, a really beautiful with an overwhelming sense of comfort and peace.  Val and I were able to share our information with leaflets and copies of Every Step of the Way to be shared with staff and patients.

In the future we will also be attending their educational team meetings to give further information of our advocacy provision and Jane now has a seat on our local cancer champions board, so it would seem that a lasting relationship has been built.

Pat McCarthy, KPAIS

 

We’re sharing information!

Pat McCarthy, Manager of Knowsley Pensioners’ Advocacy & Information Service (KPAIS), tells us about the benefits of sharing information:

As a Cancer advocate for KPAIS I am keen to meet with others to inform them of the work we do and just how invaluable this project is to offer support to anyone over 50 who has been affected by cancer. In recent months I have been out and about learning and sharing and gaining information, and handing out our leaflets and talking to anyone who will listen!  I am always amazed at just how interested and well received our information is, when people hear about our services and how we can provide support.

With a colleague from Sefton Pensioners Advocacy we set up a stall at Aintree University hospital in their elective care centre. This was very busy with patients and medical staff and the Macmillan information centre and our information was well received.

I also attended a very interesting talk on the new Clatterbridge cancer centre being built in Liverpool which will be so beneficial in the Northwest.

Val McGregor, cancer advocate and Pat McCarthy, KPAIS Manager

In June, the Macmillan information officer for St Helens and Knowsley invited us along to St Helens hospital to be part of an event they were hosting which enabled us to share our wider borough partnerships with clinical staff from a hospital in Surrey.

It has been a very busy and informative few months, but the knowledge and new working partnerships gained will be very useful going forward in delivering our services.

Pat McCarthy, KPAIS

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.

We are NOT invisible!

Whilst many Lesbian, Gay, Bisexual and Trans (LGBT) people report many good experiences of care, there are some areas that still need attention. The biggest one that could be improved is health professionals including our partners in discussions about treatments and care plans.

There are too many stories of how health professionals don’t include the partners in discussions or refer to us as “your friend here today”. This is what my partner’s doctor kept doing to us. Even though he met me and my partner on the first day and every time we met, he kept referring to me for the two years we saw him as “your friend.” This made me feel excluded and my input into his care was not valued. Sometimes I felt that I was invisible even though I was caring for him every single day when he was not in hospital.

LGBT people wish to have their partners and carers involved in their care rather than them being ignored or disregarded. We want our partners and carers involvement to be welcomed and valued by cancer professionals. They appreciate it when their relationships are acknowledged, accepted and respected.

There are some really simple changes that health professionals can make to help to facilitate disclosure by using gender neutral terms (e.g. partner) and not using language that makes assumptions about the person with cancer (e.g. Mrs). They can enquire as to who has come along with the person with cancer. LGBT people appreciate it when assumptions are not made about them, their sexual orientation, relationships, living arrangements or support network, and when professionals ask about these important areas of their life.

 

Sean Donnelly, Knowsley LCCB member

Singing at the Macmillan Coffee Morning!

Knowsley Pensioners Advocacy & Information Service were part of a great Macmillan coffee morning at the Old Schoolhouse in Huyton, which was arranged by Healthwatch Knowsley.  It was a really successful event with gorgeous cakes and a tombola full of prizes but what made it stand out was a performance by the Huyton Ukulele Troupe who were just so lively!

What made it even more interesting was that the leader of the band, Brian Matthews, told us how he himself had survived kidney cancer.  As a result of this he was medically retired from his job as a plasterer and following some intense treatment he began the Ukulele band as a way of doing something completely different. He said that everything he does now is about enjoying life and being positive.  What an inspiration!   The event was very well attended by a wide range of community members of all ages, who had a really fun sing-along with the band.

Brian is in the yellow shirt

Of course it was also a great opportunity to share information about our own Cancer, Older People and Advocacy project which generated a lot of interest, with people taking away our leaflets and the ‘Every Step of The Way’ books and many people speaking to myself and Val our advocate for more information.

Pat McCarthy, Manager, KPAIS

Why I’m a Local Cancer Champion in Knowsley

My name is Mary Spreadbury and I am 72 years of age. I have had cancer 3 times and I am still living a busy life and most of all I am enjoying myself.  I sit on the Local Cancer Champions Board in Knowsley, where KPAIS are delivering the Cancer Older People and Advocacy project.

I would like to share my experience with you. I have had 2 mastectomies and reconstruction.  The first mastectomy was in December 1995 when I was studying for my degree.  I had 6 weeks of radiotherapy (of course weekends off for good behaviour!) I went back to college and continued with my studies.  The second was a year later almost to the day in December 1996.  Then chemo and all that goes with it.

 I have had a few frights along the way.  At one time they thought the cancer had gone to my lungs, but luckily enough it was found to be the damage caused by the treatment that I have had to keep me alive.  Another time there was a lump in my neck, that was fatty tissue and so it goes on.  I always smile when they tell you that you are in remission, whatever that means.

 

Mary Spreadbury

I only had advocacy help in the last couple of years.  As I’m getting older I feel I need specialist help because my needs change with ageing.  This is why I’m volunteering with Knowsley Cancer Older People and Advocacy as it’s so important that advocacy for older people affected by cancer is a must.

Mary Spreadbury, Local Cancer Champion, Knowsley

Hello from KPAIS in Knowsley

KPAIS have worked with older people in Knowsley for 15 years delivering independent advocacy, non-instructed advocacy, welfare rights advice and reputable tradespeople and we are delighted to be part of the Cancer, Older People and Advocacy project, bringing a new service to our clients.

Cancer, Older People and Advocacy is such an exciting new project, recognising the value of advocacy for someone affected by cancer.

We have had an exciting first month, speaking to our local hospices, visiting the Cancer iVan, identifying the first members of our Local Cancer Champions Board and raising awareness of Cancer, Older People and Advocacy in Knowsley through Facebook and Twitter.

 

KPAIS information point

We had an article in our local free paper and have already had 3 self referrals directly as a result of that, which we were so pleased to see.

We are in the process of recruiting volunteers to work with us on this project and we have a lot more talks planned to let local services know what we can offer for older people here in Knowsley.

Pat McCarthy

It feels very exciting to be part of such an innovative, national project and KPAIS are really looking forward to growing and developing Knowsley Cancer, Older People and Advocacy.

Patricia McCarthy, Manager, KPAIS