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.

(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.

Fundraising volunteer Martha is an award winner

Martha McGrath, the Chair of our Newry fundraising committee, has received a Macmillan National Volunteer Award, after helping raise more than £1.3 million for local people affected by cancer over the past 16 years.

When I was looking after my Aunt, who had terminal cancer, I felt so isolated and lonely.  I would have loved to have someone I could talk to.

I was invited to a Macmillan event, where I met a man who had been helped so much by his Macmillan nurse.  She’d helped get him a suit, when he lost weight.  More than that, she’d kept him going.  He was in no doubt of that and neither was I.  That’s when I knew I wanted to support Macmillan.  And I’ve never looked back.

Over the last 16 years, I and my fellow committee members have tried our hand at all sorts of fundraising feats.

Last year, we organised a Kube challenge event, based on the ITV quiz show, and raised £20,000 in one night.

I agreed to become Committee Chair but we really are a team and I’m proud to say that we have become (or so they tell me) Macmillan’s biggest and most successful committee in Northern Ireland.

That’s why, when I was nominated for the Richard Hambro Award at the recent Macmillan Volunteers’ Conference in Hinckley, Leicestershire, I said it was really a team award. It’s named after one of Macmillan’s treasurers and is for individuals who inspire others to make a difference.

There are so many great volunteers who give up so much of their time and for so many different reasons.

No matter how little, or how much you do, as a Macmillan volunteer you can be sure you are helping people living with cancer.  That’s what I tell all our volunteers and we are always on the lookout for new committee members and new fundraising ideas.

 If you would like to find out more about fundraising for Macmillan, contact Lisa McGrogan at emcgrogan@macmillan.org.uk or our Fundraising Support Centre on 0300 1000 200.

Programme for Government must improve cancer care

The new Programme for Government must be able to address the physical, emotional, practical and financial impact of cancer.

That’s the key message running through our response to the first stage of consultation on what Northern Ireland’s devolved government should aim to achieve during the next five years.

Macmillan campaigned before the Assembly election in May to make sure that cancer care remained high on the political agenda. We were delighted that many parties made clear commitments around cancer and several also included our specific calls in their manifestos.

The NI Executive is now creating its Programme for Government, which is structured in a new way. It’s using an outcomes framework to set the overall aims before action plans are developed on how to achieve these.

Because the framework has to be agreed before detailed plans can be drawn up, the Executive is using a two-stage consultation process to capture the views of the public.

Macmillan welcomes a number of commitments made in the draft Framework. These include reducing health inequality and improving patient experience, mental health and care services, as well as increasing quality of life for people with disabilities.

Our response calls for a range of additional goals including better end of life care, support for carers and a reduction in fuel poverty.

When the agreed framework is published in autumn, we will recommend specific actions that could help the Executive achieve its goals and improve the lives of people affected by cancer.

We’re also watching for announcements about a proposed cancer strategy for Northern Ireland, something which several political parties committed to in their manifesto. Any strategy that is developed must meet the needs of people living with cancer, both during and after treatment.

Macmillan looks forward to building on our track record of working with the Northern Ireland Executive to develop, improve and modernise cancer support services.

In the meantime, please get in touch with our Policy Officer Michael if you’d like to read Macmillan NI’s full response to the Programme for Government Framework.

Email mmoore@macmillan.org.uk to request a copy.

 

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.

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.

 

Time for parties to deliver on cancer commitments

It’s almost time for voters across Northern Ireland to choose which of the 276 candidates will fill the 108 seats in the next Assembly.

During the campaign, Macmillan NI asked all parties to commit to implementing the revised Cancer Services Framework and ensure equal access to clinical nurse specialists, person-centered care and advance care planning.

You can read more about each of our calls here.

Now, with just a week until the election, the political parties have launched their manifestos to spell out what they would like to achieve during the next five years.

We are delighted to see a wide range of policy goals which have the potential to improve the lives of people affected by cancer.

Here’s a selection of commitments on cancer care and related issues – parties in alphabetical order.

Alliance Party

• Fully implement the Service Framework for Cancer Prevention, Treatment and Care.
• Create a Comprehensive Cancer Strategy, addressing prevention, early detection, treatment and support for research.
• Support parity of treatments and access to treatments with those available in the rest of the UK, including equity of access to drug treatments.
• Provide Equal access to Clinical Nurse Specialists.
• Ensure the Recovery Package is available to every patient progressing through and beyond treatment for cancer.
• Promote of the use of Advanced Care Planning for people approaching end of life.

Democratic Unionist Party

• Increase investment in cancer care by at least an additional 10% and introduce a new comprehensive cancer plan for the next decade.
• Improve 5 year cancer survival rates by 20 percentage point from the establishment of devolved government.
• Continue to promote awareness and prevention.
• Establish innovative new services and provide more nurse specialists.
• Support the additional investment of a minimum of £80 million to tackle waiting lists in each year of the Assembly term.

Green Party

• Call for an independent review of the provision of support for older people at home, including the need for high-quality domiciliary care.
• Work in partnership with charities and voluntary organisations that are championing patient care.
• Promote health through the provision of safe walking, cycling routes, public parks, playgrounds, pitches, swimming pools and leisure centres.
• Promote community healthcare, illness prevention and health promotion to combat the rising problems of obesity and its related diseases.
• Support dignity in dying.

NI Conservatives

• NHS should remain free to all at the point of use, and this extends to an opposition to the introduction of prescription charges in the NHS in Northern Ireland.
• The Donaldson Report should be accepted in full by the Executive.
• Services in Northern Ireland should be regionalised under a single umbrella Trust.
• The time has come for the ‘Transforming Your Care’ agenda to become more than just words.
• Potential should be unlocked through empowering community pharmacists through the commissioning of services from them.

Sinn Fein

• Commit £1 billion to additional health spending;
• Remove the ‘internal market’ within our health structures, specifically the commissioning/provider split;
• Involve all health workers in decisions regarding the design of a health care system that best meets people’s needs;
• Implement recommendations by the Older Person’s Commissioner on the culture of care provision, dealing with regulation and inspection, standards of care, protecting whistle blowers and training and value of workforce;
• Increase first year training intake for G.P. specialism.

Social Democratic and Labour Party

• Introduce an overarching Cancer Strategy with clear measurable targets and timescales with sustained funding at its core.
• The introduction of a Cancer Drugs Fund for Northern Ireland.
• Ensuring Ministerial targets for urgent Breast Cancer referral and treatment are complied with.
• A ‘Tobacco-free Northern Ireland’ and the enactment of legislation banning smoking in cars with children.
• Calling for the HPV vaccination programme to be extended to include adolescent boys.

Traditional Unionist Voice

• Everyone newly diagnosed with cancer should have access to a Clinical Nurse Specialist.
• Full compliance with Ministerial Targets for Cancer.
• Support for guaranteed adequate funding to provide universal access to NICE approved drugs.
• Support campaigns to highlight the benefits of a healthy lifestyle.

Ulster Unionist Party

• Introduce a NI cancer care strategy.
• Detect and treat earlier.
• Plan for the implications of an older population.
• Equal access to clinical nurse specialists.
• Adopt NICE approved drugs.
• Improve end of life care.

UK Independence Party

• No more waiting lists for appointments to ease pain.
• Ensure the NHS is free, at the point of need, for all Northern Ireland residents.
• Demand a better deal for Carers.
• Press for free car parking at hospitals for patients visitors.
• Oppose the sale of NHS data to third parties.

Helping people with cancer make the most of physical activity

Diarmaid McAuley is the Macmillan Physical Activity Manager in Northern Ireland.

A recent and growing body of evidence has highlighted that being physically active during and after cancer treatment can provide a variety of positive health and wellbeing benefits that improve clinical and quality of life outcomes. Following an active lifestyle has been shown to:

• Reduce the consequences of treatment,
• Reduce co-morbidities,
• Reduce disease progression,
• Decrease mortality,
• Decrease recurrence.

For the last 16 months, I have been working as the Macmillan Physical Activity Manager in Northern Ireland. My role is to ensure that everyone living with cancer is aware of the benefits of physical activity and can choose to become active at a level that’s right for them.

In my previous role with Sport Northern Ireland, my primary responsibility was to manage and coordinate ‘Active Communities’. This £14million investment programme is designed to increase participation in physical activity, especially among under-represented groups. The position offered me the opportunity to work with a diverse range of key stakeholders, with the aim of supporting the least active in our society to initiate and sustain active lifestyles. That experience and those partnerships are particularly relevant to my work with Macmillan.

We are currently working to establish ‘Move More Northern Ireland’, a project that will provide people living with and beyond cancer with the support, encouragement and motivation. They will receive information about the benefits of physical activity from healthcare professionals, opportunities to participate in a wide variety of activities tailored to their individual needs and interests, and the behaviour change support that they may require to remain active.

As we develop ‘Move More Northern Ireland’, we are working with key partners including health and social care trusts, district councils, healthy living centres, community and voluntary organisations, other physical activity providers. Our goal is to maximise the physical activity opportunities that already exist throughout Northern Ireland, and where gaps in provision exist, we are working to find solutions.

Crucially, we recognise the need for diversity. Physical activity means different things to different people – for some, it may mean getting along to a gym, going swimming, taking an exercise class or getting involved in sport. For others, it could mean walking a little further each day or joining a walking group, doing some gardening, or being active with children and grandchildren.

The project will support people living with and beyond cancer to identify the opportunities that work best for them, to access those opportunities at a time and place which is convenient, and to find a way to ensure that physical activity becomes an integrated part of their lifestyle.

Move More Northern Ireland will be launched this year to support people living with cancer to enjoy an improved quality of life by becoming and remaining active.

 

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.

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 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

Macmillan NI blog launch: Time to Choose 2016

Heather Monteverde, Head of Services for Macmillan Cancer Support in Northern Ireland

Welcome to our new blog about Macmillan Cancer Support’s work in Northern Ireland. We hope you like it and will follow the posts from Macmillan nurses, dietitians, physios, GP and benefits advisers – not to mention our supporters and volunteers, many of whom have been affected by cancer.

2016 is an important year for us because voters here go to the polls on May 5^th to elect a new Northern Ireland Assembly.  The future of local cancer care will be in the hands of our new MLAs and Ministers.

We want to ensure that our health and social care services deliver high quality, person-centred care to everyone facing a cancer diagnosis.

That’s why Macmillan is calling on all the political parties to ensure that the Cancer Services Framework is implemented in full.

The framework recommends that everyone who is diagnosed with cancer should have access to a Clinical Nurse Specialist, or CNS, to coordinate their care, help them through treatment, answer questions and direct them to the support services they need.

We know that having access to a specialist cancer nurse improves patient experience.  This was one of the key findings of Northern Ireland’s first Cancer Patient Experience Survey (2015).

But we’re a long way off our goal.

That’s why Macmillan needs supporters to back our election calls and lobby their candidates on our behalf.

More people than ever before can expect to receive a cancer diagnosis in their lifetime.  At the same time, advances in treatment mean that more people are living with cancer.  The challenge to our politicians and health and social care services, then, is to make the best possible use of resources.

We know that our health and social care services are under pressure to do more with less.  We must continue to work together – politicians, health commissioners, charities and patients – to ensure we can deliver the best possible care for people who are in active treatment, recovering from cancer or approaching end of life.

Doing nothing is not an option.

Traditional approaches to cancer care must change to meet current and future demand, as well as catering for the needs of the growing number of people who are coping with more than one illness or long term condition.

Every day in Northern Ireland, 30 people hear the devastating news that they have cancer.  Macmillan believes that everyone – regardless of where they live, the type of cancer they have, or the hospital they attend for treatment – should have equal access to high quality care.

Read more about our election calls.