Tag Archives: Macmillan professionals

Five ways we can support people at end of life


Here at Macmillan, we’re supporting Dying Matters Awareness Week (8th-14th May). It’s an important opportunity to talk about dying, death and bereavement and how we can support people in such times of need.

This year’s Awareness Week poses the question ‘What Can You Do?’

We know that everyone dying from cancer will have different experiences at different times. Reaching the end of life can be very difficult and may create many practical and emotional issues for those affected to work through.

Our focus is on making sure the right care is in place so everyone’s individual needs can be met.

Let’s look at what Macmillan can do right now for people who are nearing the end of their life.

  1. We can help people to find practical and emotional support at the end of life and through bereavement

Our Information and Support Services provide people with face-to-face assistance in every Trust’s cancer units. We also have free information and advice available online, through our Macmillan Support Line, in public libraries and elsewhere in communities.

  1. We can help our Macmillan Professionals develop the skills needed to provide high quality care

Having the right cancer workforce in place is a priority for Macmillan and we have more than 170 professionals working in hospitals and communities across NI. Many are directly responsible for providing end of life care and support to people affected by cancer. Some examples are our specialist palliative care nurses, GPs and various Allied Health Professionals. All our healthcare professionals are provided with opportunities to learn more about how to meet the needs of people affected by cancer at different stages.

  1. We can enable more people to use Advance Care Planning to record their wishes about how they receive care

Having an Advance Care Plan means that health and social care professionals will know what’s important to the individual and can make appropriate decisions. We have worked with the Public Health Agency to create ‘Your life and choices: plan ahead’ which is a booklet full of information on how to record your wishes.

  1. We can use our Community Palliative Pharmacy Project to help more people at the end of life stage to cope at home

This two-year project is underway right across NI. We have a Service Improvement Pharmacist in every Health and Social Care Trust, liaising with staff across the whole area including community pharmacies. This helps to ensure they have the right stock and training to address any issues. The project also aims for better quality of life for people receiving end of life care by avoiding unnecessary hospital admissions. We know that care at home is what most people would prefer and will continue seek new ways to make this possible.

  1. We can influence wider work to improve palliative and end of life care

Macmillan contributed to the development and implementation of the Department of Health’s Living Matters, Dying Matters strategy (2010-15). This is the most significant policy relating to end of life care to be created in NI in recent years. We now want to see new policy developments for ongoing progress in end of life care and patient experience. We are calling for a new dedicated cancer strategy for NI, including improvements in the quality and availability of personalised end of life care.

We know that too many people still lack access to appropriate end of life care and support. Right now, cancer is the cause of more than 1 in 4 deaths in NI. With more people being diagnosed than ever before, the need for high quality, personalised care will increase.

No matter which party takes responsibility for health and social care when the current political uncertainty ends, there’s no doubt that dying matters. Palliative and end of life care must remain high on the agenda and strategic decisions will be needed to ensure the right services are in place in the future.

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

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

The vital role of specialist cancer nurses

Cherith Semple for Macmillan

Cherith Semple is a Macmillan Head and Neck Clinical Nurse Specialist (CNS), based at the Ulster Hospital.

I work with newly diagnosed head and neck cancer patients and their families. As their key worker, I provide support and advice, and coordinate their care.

This is an important role, which includes providing psychological support and ensuring  patients have as good a grasp as possible of what treatment will mean for them, as well as helping them deal with the consequences of their cancer and any side effects of treatment. This is vital as head and neck cancer is visible and often impacts on many basic day-to-day functions, such as speaking and eating.

I’ve been a Macmillan CNS since 2000.  Early in my career, I realised that patients felt very vulnerable, once they were discharged from hospital.  One minute they were surrounded by their specialist clinical team, the next they were going home.  In fact, when patients were asked about their aftercare, one patient said, “It felt like my cord was cut from the specialist multidisciplinary team. “

That’s where our telephone support aftercare service comes in.  Patients know that, if they have concerns, they can call me.  Sometimes they just need reassurance.  Or they may need an appointment to come in straight away.  Either way, they don’t need to wait on their next review appointment.  They can just pick up the phone, with rapid access to an appointment, should they need it.

As part of the Macmillan-funded Transforming Cancer Follow Up programme, I now run a surgical follow up clinic for low-risk patients.  We’ve also produced a leaflet on the signs and symptoms of recurrence to give patients the confidence to self-manage their condition and know what to look out for.

We have recruited two volunteers who come and help with the weekly follow-up clinic – one of whom was my former patient.  Meeting someone who has come through similar treatment and recovery inspires a lot of people.   The volunteers help patients complete an electronic holistic needs assessment (eHNA) to help identify their current needs and concerns.  That means talking through a list of possible concerns and identifying the support they require.

The biggest reward for being a Macmillan CNS is making a positive difference and helping improve the quality of life of my patients.   I’ve been able to work on patient-focused research, which has made the cancer care we provide more person-centred.

Last year, I was the winner of the NI RCN Nurse of the Year award.  It was an honour and a privilege because there are lots of nurses doing excellent work and providing exceptional care.  Finally, no one works in isolation, so it’s been lovely sharing this award with colleagues who’ve got similar core values as myself – putting patients at the heart of their practice.

Watch Raymond’s story on our Macmillan NI YouTube site