Widening the skill mix in Dorset’s cancer care

Macmillan Cancer Support has created a role of Cancer Support Worker and posts are currently being filled at the three Trusts in Dorset.  Deborah-Lynn Wilkinson is helping patients at Royal Bournemouth Hospital with accessing information and support based on an assessment of their needs using the electronic Holistic Needs Assessment (eHNA). If that sounds like a bit of a mouthful then it’s worth noting that Deborah-Lynn is very careful to avoid jargon when speaking with patients.   What the patient experiences is a friendly and informal conversation focused on their wellbeing.

Deborah-Lynn Wilkinson

Deborah-Lynn visited Jo Lee at Help and Care to get an understanding of independent advocacy support from Dorset Macmillan Advocacy and find out what else the organisation can offer locally.  Then Kathleen Gillett visited Deborah-Lynn at the hospital to hear more about the scope of the Support Worker role. Patients can complete the eHNA questionnaire in clinic on a tablet or at home via a web-link and the results form the basis of a care plan.  At present Deborah-Lynn is working on one cancer pathway and will contact patients at three points in their cancer journey to ensure to pick up changing needs.

The Support Worker posts will enable the Clinical Nurse Specialists to use their clinical knowledge and time to best effect and widen the skill mix in the department.  Macmillan Cancer Support’s latest report on workforce From the Frontline includes recommendations to do just this.   We are hopeful that the eHNAs will spotlight where there is a need for advocacy support and that the Support Workers will refer to the advocacy service.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy

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Statutory and voluntary sectors working together in Dorset

Katie Hunter, Dorset Cancer Partnership Cancer Services Coordinator at Dorset Clinical Commissioning Group has a wide remit which includes patient and public involvement.  Katie came to Help and Care at the invitation of Sue Newell, Wessex Voices Project Lead to meet Jo Lee and Kathleen Gillett the coordinators of Dorset Macmillan Advocacy having already met colleagues at Dorset Advocacy.

Katie explained Dorset Cancer Partnership’s plans for improving cancer services in the county and we went on to discuss how volunteer advocates and advocacy partners might be able to share their views.  Katie has already met with the chair of Dorset Macmillan Advocacy’s steering group, Cancer in Older People’s Development Group, and two peer volunteer advocates but will attend a future volunteer team meeting to hear more about why and how people affected by cancer are providing advocacy support and what they get out of it.

Kathleen and Jo suggested that volunteer advocates can often see immediate benefits of the help they are giving whereas taking action to improve cancer services can require a more long term view.  Katie will be able to ask the volunteers how they would like to participate in the newly developed local involvement opportunities.

L-R Katie Hunter, Jo Lee and Sue Newell

 

Signposting to other local sources of support

We keep on top of new services and sources of support for people affected by cancer in Dorset because we recognise that people can benefit from many different types of help. Regional charity Wessex Cancer Trust  opened a support centre in Bournemouth last year which is open three days a week for people to drop in.

The centre manager, Emma Ormrod, recently visited us at Help and Care and met Advocacy Manager, Naomi Unwin, Macmillan Senior Advocates/Coordinators Jo Lee and Kathleen Gillett.  We discussed how our two services dovetail.  The drop in is ideal for people who are able to get out and about and would benefit from conversation with trained volunteers and other people affected by cancer on an adhoc basis.  Our service is ideal for those who find it more difficult to travel for whatever reason and offers regular support through an on going partnership with one trained volunteer. We can also give support at the person’s home and accompany them to medical appointments.

Naomi Unwin, Advocacy Manager, Help and Care; Emma Ormrod, Bournemouth Support Centre Manager, Jo Lee, Senior Advocate, Dorset Macmillan Advocacy

We’ve created an ‘at a glance’ document to help the volunteers at each service be aware of what the other service offers to facilitate signposting and referrals.   In fact our services already share a volunteer and advocates have visited the centre to accompany people who asked for support in going there for the first time. We look forward to continuing to work in partnership for the benefit of local people.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy (Help & Care)

 

 

Thanking our volunteers in Dorset

We were delighted to be able to thank our volunteers around the time of Volunteers Week for the energy and enthusiasm they give to helping people affected by cancer in Dorset.  Staff from Dorset Macmillan Advocacy delivery partners Help and Care and Dorset Advocacy along with Macmillan Partnership Quality Lead Paula Bond and Macmillan Volunteer Services Manager Sam Hudspith joined the volunteers for a very informal cream tea.

The volunteers were then presented with some donated goodies as well as certificates of appreciation from OPAAL.  The garden at The Grove Hotel in Bournemouth, which is open to cancer patients and others with serious illness, was a perfect setting for the afternoon on what must have been the hottest day of the year.

Some of the group in a shady corner

Kathleen Gillett, Coordinator – Dorset Macmillan Advocacy

Today we hear from Emily Brown, Interim volunteer manager and independent advocate at Dorset Macmillan Advocacy:

I am new to Dorset Macmillan Advocacy service, not to Dorset Advocacy, but I am a newby on this project.  I have been blown away by the dedication given to it by staff at Help and Care and Dorset Advocacy, the members of our Cancer in Older People Development Group and of course by all of those volunteers who give their precious time and share and draw from their own experiences in order to support those that need it.  I have come at an exciting and challenging time as we strive to illustrate the benefits, positive outcomes and impact of the service on the people we support…we know the impacts because advocates see this first hand, but how do we convey its importance to others when times are tough, and how do we show that advocacy can also be a benefit to the NHS?

Jenny Purcell and Karen Piggott of Dorset Advocacy were invited to speak at the Clinical Commissioning Group’s (CCG) lung cancer pathways information day last month.  They presented to a number of professionals on the benefits and impact of advocacy.  We often talk about the benefits of advocacy for the individual which is, without doubt, the most important thing but what is not always considered are the benefits of advocacy for the service providers.

We have recently received an independent evaluation of our service which illustrates exactly this.  Essentially what the evaluation does is highlight how the introduction of advocacy support can help to ensure that the choices that the person makes are well informed, that the individual has a consistent person throughout their journey, and that as a result the input of advocacy can help the process to move more swiftly, advocates can ensure that people can keep to their appointments and that the individual’s other concerns are being addressed allowing them to focus on decisions about treatment. 

In fact there was a recent example with one of our cases when a health professional at Dorset County Hospital postponed an appointment by a few days in order for an advocate to be able to meet their partner and attend this appointment with the patient.  This action alone indicates to me that this health professional recognised the value in having an advocate present to support at the appointment.

Our work continues with the CCG in Dorset to initiate the introduction of advocacy as a recognised standard of good practice on the lung cancer pathway. We are not there yet but the evaluation along with our Case for Support will, we hope, enable us to convey the impact of advocacy and put together a pilot scheme that can illustrate the values of the service for the service providers as well as those who receive it.

Emily Brown, Dorset Macmillan Advocacy

It’s as tough, if not tougher, for the family as for the patient

Family is still the most important support that we have on the cancer journey according to Colin Pritchard, Research Professor at Bournemouth University’s School of Health and Social Care.   ‘If you have no family it is very hard for a patient to go home from chemotherapy treatment alone,’ Colin said, ‘If you do have family it can be as tough if not tougher for the family as for the patient.’

Colin was speaking from his personal experience of cancer in reply to my question on quality of life for those people living with and after cancer.  He felt that the type of ongoing support that we can offer through Dorset Macmillan Advocacy was invaluable especially for people who are isolated.  He also described the ‘rollercoaster experience’ over several years of a friend having to cope with cancer recurrence.

I attended the public talk by Colin as part of the Bournemouth University annual Festival of Learning.  He presented his research under the title ‘Just how good or bad is the NHS in reducing cancer deaths? A comparison with the USA and the other Western nations’. He co-wrote the research with Dr Tamas Hickish, a consultant medical oncologist at Poole and Royal Bournemouth and Christchurch hospitals in Dorset.

Kathleen Gillett and Professor Colin Pritchard

The research, which is shortly to be updated, shows that the  NHS in England and Wales has helped achieve the biggest drop in cancer deaths and displayed the most efficient use of resources among 10 leading countries worldwide, according to the study published in the British Journal of Cancer in 2011.  At Dorset Macmillan Advocacy, one of our challenges is to help people living with and beyond cancer to enjoy a good quality of life through the support of our peer volunteer advocates.

Supporting carers – additional funds secured by Dorset Macmillan Advocacy

Dorset Macmillan Advocacy, a new partnership between Help and Care, Dorset Advocacy and Macmillan Cancer Support, has been successful in its bid for funding to extend its help to carers.

‘We recognise that carers of people with a cancer diagnosis need support in their own right – separate from that being provided to the older person with the cancer diagnosis.  We also understand that carers who have their own cancer diagnosis need additional support to consider the impact of their diagnosis on their caring role and the ongoing needs of the cared for person’ says Keri Harrison, Access and Community Support Manager at Help and Care.

Keri Harrison

Evidence gathered locally during the pilot phase led the Dorset Local Cancer Champions Board to seek additional funding for a carers support planning service over and above the three year’s funding already secured from regional Macmillan Cancer Support.   The team was successful in an application for one year’s funding to the Dorset Carers Support Project Fund facilitated by Access Dorset on behalf of Dorset County Council and Dorset Clinical Commissioning Group.

These issues were highlighted for Macmillan Project Coordinator Kathleen Gillett recently when reading the Carers Trust report on mental health Triangle of Care . The section on Carer Support which seems to apply equally to people affected by cancer underlines how important it is to offer ongoing support to carers: ‘It is rarely sufficient to carry out a carer’s needs assessment in a one-off interview. This may be the first occasion when the carer’s interests have been addressed and their primary need may be to off-load and explore better care for the person they care for, rather than their own needs.  As rapport and confidence in the process develop there will be a more meaningful exchange of information and insights.’

Jo Lee

Jo Lee, Senior Macmillan Advocate says ‘Using person-centred thinking tools we will work with carers affected by cancer to identify what is important to them, what changes they want to make to their life, how they want to be supported and who they want to be supported by.  We recognise that with improving survival rates, carers affected by cancer may be caring for a long time and need ongoing and consistent support.  We also understand that carers support needs will change depending on where they, or the person they are caring for, are on their cancer journey.’

Marion’s story

Recently we posted a reading of Nina’s story. Now you can hear about Nina’s story from the point of view of Marion, Nina’s advocate. This time the story is told by Keri from Help and Care in Dorset.

 

You can download a copy of Every Step of the Way which contains Nina’s story here

Nina’s story

Nina’s story is one of the 13 stories told in our recent publication Every Step of the Way. In the video below, Nina’s story is read aloud by Jo from Help and Care, one of our partners delivering advocacy services for older people affected by cancer in Dorset.

Someone to rely on

Recently project partner Dorset Cancer Advocacy was featured in the following article in the Dorset Echo.

Someone to rely on- Dorset Cancer Advocacy offering support to older people with cancer

Dorset Cancer Advocacy is an innovative service that offers support and information to older people with cancer.

Marion, Nina’s advocate

Here Nina, 69, a Bournemouth widow who has been battling breast cancer, explains how it helped her cope

“Before my diagnosis I was enjoying retirement and keeping active by walking and cycling, I had never felt so well. I was diagnosed with breast cancer following a routine scan and have undergone nearly a year of treatment since then, including two courses of chemo-therapy, surgery and radiotherapy.

I feel lucky that the cancer was found, but when they say cancer it knocks you flying. I’ve told some of my friends just the details that I want them to know, I don’t want to burden them.

I was taking part in a clinical trial during my chemotherapy course. The Research Nurse suggested I try the Dorset Macmillan Advocacy service as it offers home visits.

MAMOGRAM: Screening is to be extended in older women

The service co-ordinator came to meet me at home and then supported me for a short time, including with hospital appoint-ments, before introducing my volunteer advocate Marion Summers to me.

I could share my feelings about the cancer and what has happened to me with the co-ordinator and Marion. I knew they were there to support me. The effects of the chemo-therapy meant I would forget what people said; I felt turned inside out. Other side effects meant that I stopped driving and lost the confidence to use the bus and to go out.

Marion took written notes at hospital appointments for me to refer to afterwards. When I was offered surgery I felt stunned; I wasn’t sure how I would manage at home alone afterwards.

Before my operation Marion gave me information on getting extra help at home and meal deliveries, in case I needed it after my operation, and she also looked into local health walks.

After my operation Marion called to see how I was and find out when I would be going home.

I felt more confident with someone behind me. I was quite afraid of one particular health professional and, when we went in for the appointment, Marion said ‘We’ll do it together’ which helped a lot. I feel listened to.

Now I am getting out more, driving my car again and using the bus for local trips.

It is good to have someone else to rely on when you are alone. After my operation Marion said ‘We’ll be there for you’. It gives you a warm feeling someone saying that.”

One in three are over 70

There are around 1.3 million older people (65+) living with cancer in the UK One in three cases of breast cancer – and more than half of deaths – are in women who are aged 70 or older. Despite this, the age group is not routinely screened, although the cut-off age for screening is to be extended to 73 by 2016. One study has found that elderly women are being denied life-saving breast cancer surgery routinely given to younger patients.

You can read Nina’s story and Marion’s take on advocacy support in Every Step of the Way, our new publication.