Tag Archives: Patient experience

Positive patient experience helps people to live with cancer

Improving how cancer patients experience treatment and care is one of Macmillan’s top priorities.

Our latest report, The C-word [PDF 2.9MB], has revealed that 90% of people with cancer say they are still living their lives as normally as they can. As the report states, this starts with them having a positive experience of care from diagnosis onwards.

Knowing what patients think about the care they’ve received has important benefits. Statistics about waiting times, stage at diagnosis and survival rates can all show how well the healthcare system is addressing cancer as a medical condition. But measuring patient experience gives us a distinct perspective on how effectively services are meeting people’s individual needs.

For 1 in 10 people in the UK, cancer is their biggest fear. It is described as ‘the worst news imaginable’ by around half of those diagnosed.  By understanding their experience as they move through the system, we can find ways for services to develop, adapt and reduce the impact of cancer.

That’s why Macmillan has worked to establish a Cancer Patient Experience Survey (CPES) in each UK nation. Questions include how patients were told they had cancer, what information they received about their condition and available support, if they felt involved in decisions and what sort of care they received after leaving hospital. These important aspects of care all contribute to better outcomes.

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In Northern Ireland, the first CPES took place in 2015 and found that 92% of patients rated their overall care highly. Specific questions resulted in some significant variations among cancer types, but the overall picture is very encouraging and the new evidence will help to address gaps. We hope the survey will be repeated in 2018.

It’s clear how far cancer services have come, but demand has increased to the point where any slowing of progress could lead to worsening outcomes. In the UK, there are now around 360,000 new cancer diagnoses each year, outnumbering weddings by more than 70,000. Compared to a generation ago, people with cancer are now twice as likely to survive at least 10 years after being diagnosed.

Some key steps must be taken to uphold and improve levels of patient experience throughout the cancer journey. We need to see ongoing investment to transform healthcare and ensure services are suitable now and into the future.

In addition, Northern Ireland remains the only part of the UK and Ireland without a current strategy for cancer services. Without this, we risk limiting the impact of public spending on cancer care and failing to invest adequately in new developments.

Ultimately, we must continue to enable people with cancer to live the life they want to live.

Why I’m supporting Macmillan’s ‘Time to Deliver’ campaign

Madeleine speaking best.jpgMadeleine Coyle from Prehen in Derry is supporting Macmillan’s campaign for a Cancer Strategy for Northern Ireland.

When I was admitted to Altnagelvin Area Hospital in January 2013, suffering from pneumonia, little did I know that I had developed lung cancer.  Tests revealed that the disease was at an early stage.  I had to undergo surgery but was told I wouldn’t need follow-up chemotherapy or radiotherapy.

I was lucky.

During the course of my treatment, I received help from the Macmillan/North West Advice Service and their team of benefits advisors based in the Sperrin Unit within Altnagelvin Hospital.  Lisa, one of their advisers, sent me details of the different welfare payments I could claim and even helped me fill out all the forms.

I never expected to get help with benefit claim forms.  I didn’t know the service existed.  That’s why it’s so important to have support services in hospitals but you do need access to information and support in your local area too.

That’s why I’m supporting Macmillan’s ‘Time to Deliver’ campaign for a cancer strategy for Northern Ireland.  England, Scotland and Wales already have cancer plans in place which cover prevention, diagnosis, treatment, recovery and palliative and end of life care – all the stages of the cancer journey.

With more and more of us being diagnosed with cancer and living longer with the disease and the long term consequences of treatment, we need to ensure that any cancer strategy for Northern Ireland addresses the needs of people living with cancer after their treatment has ended.

You can support the campaign too. Just use Macmillan’s email template to contact the Health Minister to say you want to see cancer care become a priority in the new Programme for Government.

Click here to email the Health Minister using the template.

Exciting times at Altnagelvin

Tara Boyle is the Macmillan Capital Project Manager for the new health and wellbeing campus at Altnagelvin, incorporating the new Macmillan Support Centre.

Paula, Tara & Andy close up

(Pictured L-R: Macmillan’s Paula Kealey, Tara Boyle and Andy from TAL).

It’s exciting times at Altnagelvin because the roof is on and the new Macmillan Support Centre is really taking shape.

As the Capital Project Manager, I’ve been working closely with the Macmillan design team right from the word go.  I’m responsible for keeping everything within budget and on schedule so I spend a lot of my time monitoring progress on site in my hard hat and checking in with Andy and the construction crew from TAL.

 The new health and wellbeing campus is being built on the perimeter of the Altnagelvin hospital site and will incorporate Agnes Jones House, a beautiful turn-of-the century building.  Thanks to the Western Health and Social Care Trust, Agnes Jones is being refurbished and will house facilities for people with long term conditions.  The two buildings, old and new, will be linked by a landscaped courtyard.

The new campus – the first of its kind in Northern Ireland – is still a building site and very much a work in progress.  No sign of a garden yet. But you can take a virtual tour by viewing our digital fly through here.

Visitors to the Macmillan Support Centre will enter into a bright, welcoming and relaxing environment.  The central reception area will provide easy access to all the facilities.

There will be a library leading into a large communal lounge, which has access to an outdoor space – offering privacy and calm.

In addition to bright and open public spaces, there will be a dedicated suite of rooms where individuals can receive counselling, benefits advice, wig and prosthesis fitting, or complementary therapies.

And we’ve made sure there’s a larger room for group activities such as art therapy, gentle exercise classes, support group meetings and training sessions for volunteers and staff.

The Macmillan Support Centre has been designed with input from people affected by cancer.  I really feel privileged to be doing this job because I know the real difference that the centre and new campus will make to the lives of people affected by cancer and other long term conditions.

It’s been fascinating to be part of every stage of development – from the drawing board to the construction site.

I can’t wait for the finished product and to welcome visitors through those doors.

Why every cancer patient should get benefits advice

Jean Murray is a Macmillan CAB benefits adviser, based at the Mater Hospital in Belfast

I started out as a volunteer adviser with Citizens Advice Belfast but, for the last 18 months, I’ve been working as a Macmillan CAB benefits adviser on site, here at the Mater.

I’m on hand to help people who are being treated for cancer with benefits checks and applications, as well as more complex case work. It’s so important to be working in a hospital setting because it means I’m ready to get the ball rolling, as soon as they are diagnosed.  I’ve been able to build good working relationships with the nurses and social workers which has increased the number of referrals coming from the Mater site to our service. I can visit clients on the ward, make an appointment to see them in my office, which is just across the road, or carry out a telephone appointment.

Many of the cancer patients I see are in a state of shock.  Their lives have been turned upside down.  All of a sudden, they’re facing a life-changing diagnosis and a potential loss of income, if they or their partner have to stop working.  Few are aware of which benefits payments they can claim and people are always telling me that they wouldn’t have known where to start because many have never had to deal with our complex welfare system.  It can be overwhelming at the best of times.

I’m proud to say that, last year alone, Macmillan’s network of benefits advisers in Northern Ireland helped over 6,000 people with cancer claim more than £14 million in benefits payments and patient grants.  Here in Belfast, I and my colleagues made sure our clients – all 2,285 of them – received more than £5 million in ongoing welfare entitlements and one-off grants.

It’s a huge amount of money, if you think that many of these new claimants might not have known about their entitlements without the specialist advice service that I and the team of Macmillan CAB advisers provide.

Northern Ireland has the highest level of fuel poverty in the UK and this has resulted in a disproportionate number of cancer patients needing financial help to cover heating bills. Research by Macmillan has found that three out of four people in Northern Ireland find themselves, on average, around £300 a month worse off as a result of a cancer diagnosis, due to their reduced incomes and increased expenses.

I’m here to maximise their income with patient grants to cover things like the cost of getting to and from hospital, or heating bills. People going through chemotherapy or radiotherapy often tell me that they feel the cold more, but are worried about paying to keep their homes warm.

That’s why I would like to see every cancer patient referred for benefits advice to help to stop escalating financial difficulties and worries at a time when people should only have to focus on their health.

For financial support and to find a nearby face-to-face benefits advisor visit http://www.macmillan.org.uk/moneyworries or call free on 0808 808 00 00

Providing specialist cancer care when patients need it most

Sam Keers from Dromore was diagnosed with prostate cancer last year.  He underwent chemotherapy and was given a helpline number to ring, in case he developed serious side effects.  Sam says he saw this as his ‘guarantee card’ because it guaranteed him specialist care, when he needed it most.

More Sam and Laura

When I was diagnosed with prostate cancer last year, I was told it was at an advanced stage. My consultant explained that there was no cure, but that chemotherapy could extend my life expectancy and buy me time.

I knew that, if I could get to enjoy another two years of life, I had to try.  I was determined to spend as much time with my wonderful grandchildren as possible.

So, even though I was worried about the possible side effects of chemotherapy, I said yes to the treatment.

I didn’t go into it blind. Staff at the Mandeville unit at Craigavon Area Hospital explained the effect chemotherapy might have and what could go wrong.  I knew my life was on the line because of my cancer and also because of the treatment.

Luckily for me, the Southern Health and Social Care Trust had already established an Acute Oncology Service – the first of its kind in Northern Ireland.

I was given a helpline number to call and I saw this as my ‘guarantee card’.

I spent most of my working life in the commercial sector, where guarantees are key. And where, if you make a promise, you have to deliver on that promise.

After one session of chemotherapy, I went home but suddenly became very unwell. I developed a very high temperature and so, instead of heading for the Emergency Department, I phoned the Acute Oncology helpline.

Staff on the end of the line were reassuring and, above all, caring.

I went to hospital and, within thirty minutes, I was on a drip in the chemotherapy unit and admitted to hospital with neutropenic sepsis.  Chemotherapy can cause your white blood cell count to drop, making you more prone to infection.  And that’s what had happened to me.

I was discharged and allowed home after four days because I had been treated so quickly.  Thanks to the Acute Oncology team, made up of Macmillan Clinical Nurse Specialists, together with a doctor, my care was well coordinated.

When you are receiving chemotherapy, it can be very frightening if you develop side effects, but knowing this service was in place gave me the reassurance and confidence I needed to continue with my treatment.

Not only was I grateful for the specialist care I received but I was overwhelmed by the manner and spirit in which it was delivered.

It really is a magnificent service.


Advance care planning gives us some control over our future

For the past 10 years, Dr Graeme Crawford has worked as a Macmillan GP Facilitator in the North Down and Ards area of the South Eastern Health and Social Care Trust.

Graeme Crawford at desk

I am part of a Palliative Care Team involving a Consultant, specialist nurses and Allied Health Professionals (Physiotherapist, Occupational Therapist, Speech and Language Therapist and Dietician) who meet to discuss patients with palliative care needs. We also provide training to our professional colleagues in palliative and end of life care with an emphasis on forward planning to ensure a high level of care for patients and their carers.

My work has involved promoting advance care planning. This is a valuable tool for helping ensure those people who are approaching end of life with cancer and other life limiting illnesses are involved in decisions about the care they receive.

Advance care planning is used to help health and social care professionals act in accordance with the wishes of a patient who has lost capacity (when their condition has worsened to the extent where they are no longer able to make decisions or communicate their wishes).

Making plans about the future is important for anyone who is living with cancer or any other long-term condition. It is never certain how an individual’s condition will progress, or for how long they will be able to retain control of their decisions about what care they receive and where they receive it. I would also encourage anyone who does not have an illness to think ahead and consider making an advance care plan.

Unlike some other options for planning ahead (such as an Advance Directive to Refuse Treatment or Enduring Power of Attorney) an advance statement is not legally binding and is free to make. It is a voluntary process of discussion and review to help an individual who has capacity to anticipate how their condition may affect them in the future. If they wish, they can then set on record choices or decisions relating to their care and treatment and have the option of changing these later. In the event that the individual’s illness progresses and they lose capacity, professional and family carers can refer to the decisions recorded. The advance care plan will only be used if the person loses capacity.

Many of us are reluctant to consider a plan, hoping we will not need it. Illness may arise unexpectedly, as in cases of stroke, or gradually take away our ability to make decisions, as happens with dementia. Talking about the future is something we can all find difficult but planning ahead can have many benefits. It can initiate important decisions with family members, helping avoid later disagreements and reassuring family members that their loved one’s wishes influenced their care.

Macmillan and the Public Health Agency have published a free booklet “Your life and your choices: plan ahead”. It provides information and forms to help with various aspects of advance care planning, beginning with who to raise the subject with and what to say. People can refer to it for information on making a will, creating enduring power of attorney, organ donation and funeral planning.

If we record our wishes it is more likely that we will get the care that’s right for us. It gives us some control over our future.

Watch Evelyn’s story on our Macmillan NI YouTube site