First Steps Women’s Centre

As part of Palliative Care Week 2017 we have published our End of Life Care report, which outlines some key issues in relation to end of life care experiences. Care at the end of life is a significant and important element of all care and the evidence in this report describes how the care received at this time can have a significant impact on patients and their families.

There were three areas highlighted in our report that service users felt needed addressing: communication, coordination of care between healthcare staff, patients and their families, and training for staff who are providing end of life care.

These were the reported issues for end of life care for both unexpected deaths and patients who were terminally ill. These global issues are not new and a lot of work has already been completed to find sustainable solutions to these issues.

There are important messages for service providers, commissioners and policy makers that will be presented for discussion and agreement in the context of future planning of end of life.

Lindsay Robinson

Early last year, I shared my story of postnatal depression and my two-year battle with illness on this website. I was just at the start of my journey of recovery and was writing a personal blog. 

I was five months into treatment - antidepressants, mental health team support, talking therapy and cognitive behavioural therapy (CBT). I found it hard, some days, to believe that I really could get better, but I was trying hard to hold onto hope. 

One year on, things are very different. While my recovery is ongoing, I know that it is possible to get better. I am so thankful that life is now to be enjoyed rather than endured. I'm ready to thrive not just survive. 

"In Northern Ireland, approximately 180 women are diagnosed with ovarian cancer every year, and 120 women lose their lives each year. When a woman is diagnosed at the earliest stage, her chance of surviving ovarian cancer for five years of more doubles from just 46 per cent to more than 90 per cent, and knowing the symptoms of ovarian cancer can save lives.

The challenge is a chance to spread a very important message: knowing the symptoms of ovarian cancer can save lives. In NI we do not have  a dedicated support network for those effected by the disease.

Before I retired, I worked as a mental health nurse teacher with a special interest in older people. I taught in the classroom and in care settings.

Since retirement, I have been involved in research, as well as volunteering to support older people in all aspects of their wellbeing.

One person in every 500 will develop Parkinson’s – mostly those aged over 50. It is a disease of the nervous system that progressively affects muscular control, invariably to the detriment of verbal and non-verbal communication.

All this week, the media has been giving special coverage on the experiences of disabled people in the workforce and as consumers. One interviewee said employers were “missing a trick” because people with a learning disability or any disability are resilient, flexible and good at problem-solving because they have had to be. This is what Gerard from the PCC has to say on this.

I'll never forget the day when I was 19, I was told at the end of a workplace training programme to forget about a career in health and social care.  I wasn't capable of this type of work.

Instead I was advised to consider cleaning jobs or stacking supermarket shelves. Why? Because I have a learning disability.

It is estimated there are 19,000 people living with dementia in the north of Ireland, but only some 13,000 have received a formal diagnosis. Looking ahead it’s expected that by 2051 there will be around 60,000 people with dementia.

Since September 2016, the #STILL ME dementia awareness campaign has been running across Northern Ireland.  The campaign features local people living with dementia talking about how their condition affects them. 

Parkinson’s Awareness Week 2017

Since 1969 we’ve been working tirelessly to help find better treatments for people with Parkinson's. Whilst we've made developments in some areas, the last significant drug discovery for Parkinson's was over 50 years ago.

We know Parkinson's drugs aren’t good enough. They don't stop, slow down or reverse the condition or its effects. They can only mask some symptoms for a time – and they can have distressing side effects.

People with Parkinson's need a breakthrough. And we won't wait any longer.

That's why in Parkinson's Awareness Week, which will run from 10-16 April 2017 we'll be launching our new campaign – We Won’t Wait – asking the public to donate and support our new research approach. We’ll also be raising awareness of the need for better treatments.

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,

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