First Steps Women’s Centre

As part of the Patient and Client Councils Make Change Together initiative ,they have now released an opportunity for the public to help shape thinking in the Department of Health’s Review of Urgent and Emergency Care. They are targeted workshops for older people, those living with mental health issues, children and young people and their carers and advocates.  Click on the picture below.

Make Change Together

Palliative Care Week 2018 begins on Sunday 9th September and in our blog this week, Brendan O’Hara from the All Ireland Institute of Hospice and Palliative Care explains why it is so important to raise people’s awareness and understanding of palliative care.

This Sunday marks the beginning of Palliative Care Week; an annual campaign facilitated by All Ireland Institute of Hospice and Palliative Care which runs this year from 9 to 15 September. 

This time around our theme is ‘Palliative Care, Because Every Moment Matters’.

Palliative care focuses on helping a person, of any age, with a life-limiting illness, to achieve the best quality of life. It involves the management of pain and other symptoms and provides support for social, emotional and spiritual needs.

Queen’s University Belfast have conducted research whichCancer Caring Coping - Intro Image  has showed us that, if you care for someone who’s affected by cancer, be that a family member or a friend, then your health can also be affected.

A group of people who have been affected by Cancer have put together this video to share with you their experiences and what worked for them.

What is important as a Carer is that you look after yourself.  

For more information click here

While it has been widely reported that waiting times continue to grow, there has been little focus on the lived experiences of people who are waiting for sometimes urgent and life-saving care.  This week saw the launch of “Our lived experience of waiting for healthcare – People in Northern Ireland share their story”. Chief Executive, Maeve Hully explains more. 

Waiting for healthcare is a frustrating and worrying experience.  People do not know how long they will wait. Deteriorating physical and mental health, worsening pain, loss of income and social isolation are just some of the issues that people are struggling to cope with as they wait for care.

I remember laughing when doctors first shared their concern that I was suffering from anorexia. Were they stupid? Anorexics were those people who were skin and bone, those who had the will power to last days without food.

I wasn’t strong enough to be like them or at least, that’s what she told me. I was weak because I had to eat half a banana to stop my tummy rumbling while sitting a GCSE exam. Long story short, it was now three years since I lost my dad. I was due to receive exam results in one week’s time, and I was admitted to Beechcroft Hospital in Belfast. That was my home for the next six months and so I had to take a year out from school.

Paula Bradley MLA was diagnosed with cancer when she was just 24 and admits she knew nothing about the disease. It was only much later that she realised how serious the condition can be. As part of Cervical Cancer Prevention Week (22-28 January) Paula joined forces with Cancer Focus NI to urge women to be vigilant and get regular smear tests.



Paula pictured with her parents

“I went to my GP with really debilitating, severe back pain that had been bothering me for a couple of months. I was separated from my husband, and was working and looking after the children, so it was full on.

My doctor suggested I should have a smear test as it had been a while since I’d had one. I thought, ‘Really, why would you do that for a sore back?’

The doctor arrived at my house a couple of days later as it was on his way home from work. He said he needed to speak to me. He told me the smear had come back and there was a problem and that he was going to refer me for further investigation. After more tests I found out I had cervical cancer.

Baby Loss Awareness Week runs from 9-15 October. Last year, we featured a blog entitled I Am One in Four by Alison Carr. That’s because one in every four pregnancies in the UK end in miscarriage. Alison suffered not just one miscarriage. In total, she had five!

Having three or more miscarriages is termed recurrent miscarriage and affects one in every 100 pregnancies. In her blog, Alison spoke movingly about her ‘grief, fear, pain, jealously, self-recrimination and self-loathing’ which grew with every miscarriage, and of the lack of specialist bereavement counselling to help her come to terms with her losses.

She also talked about the lack of specialist care for women in Northern Ireland who experience recurrent miscarriage, and having to make multiple trips to London to attend a specialist clinic. Alison is one of the lucky ones. Some women are never offered referrals to specialist clinics. Alison got the diagnosis and treatment she needed and, today, she is the proud mother of two girls.

Ashley Clarke, a carer, full time student, volunteer and trustee of Huntington’s Disease Association Northern Ireland (HDANI) describes her experience of caring for her dad who has Huntington’s.

When I was 14 years old my father was diagnosed with Huntington's, an incurable brain disease that slowly breaks down the centre of the brain causing a gradual loss of control over movement, speech, behaviour and thoughts. 

At the age of 16 I became his carer along with my brother Ryan. Two years is not much time to adjust and face the harsh reality of HD. From then I have had to watch him change every day as the HD mask takes over his whole body, mind and mannerisms.

There are currently around 657,000 people from Northern Ireland on the NHS Organ Donation Register, that’s around 36% of the total population.

5th September 2016, sees the start of Organ Donation Week, a time when the organ donation and transplant community raise awareness of organ donation.

There are many cultural and religious reasons why people would choose to donate their organs or not. It is and should remain a decision based on individual values and beliefs.

While it’s a personal choice, and regardless of the outcome of the decision, its important family and friends are aware of a person’s wishes. We know there is a willingness to discuss dying and related issues, because people openly share their views and experiences with us when we meet them in community halls, shopping centres, cafes and other places across Northern Ireland.

People have told us that information on practical issues such as writing a will, making funeral arrangements, advice on insurance,

There is no doubt that with an ageing population, the pressures on healthcare services will continue to grow, so more effective and efficient ways of using resources and delivering services in the future need to be adopted.

The Health and Social Care Board launched a campaign called Wipe out waste. Keep your eyes peeled for it throughout September! They say £18 million is wasted in Northern Ireland every year from medications not being used or thrown away. They’re encouraging people to help reduce waste, by checking their stock before re-ordering and letting their doctor or pharmacist know if they think they are getting too much.

It’s interesting to know the cost of medicine waste and what it could be spent on, if saved. For example, the Health and Social Care Board say that £18 million is the equivalent to 19,000 cataract operations; 700 community nurses; or 1200 treatments for breast cancer. Do you think having information like this can make a difference to people’s actions in Northern Ireland?

To view or add a comment, click here

Courtesy of Patient & Client Council

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