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Meet Robyn. She's 26, studying for a PhD in History and fighting a daily battle with pain.

'My problems started when my periods did, at the age of 13. After a few months my mum took me to the doctor about my irregular, heavy, painful periods and I was told it was just my lot in life. I was a woman, periods were meant to hurt.

Throughout my teenage years I was put on multiple contraceptive pills to help regulate my periods and had numerous scans and tests and quite a few misdiagnoses. I wasn’t even allowed to see a gynaecologist until I turned 18. At the age of 20, my pain changed from its monthly pattern to daily, crippling pelvic pain. I was constantly told the pain was all in my head, there was nothing medically wrong with me.

It wasn’t until I had argued my way into a laparoscopy three years ago that I was finally diagnosed with endometriosis. Endo is a condition where tissues similar to those that line the uterus and shed each month are found elsewhere in the body, usually in the pelvis. The deposits of endometriosis don’t show up on scans and can only be seen with keyhole surgery. It can cause painful periods and ovulation, abnormal bleeding, pain during or after sex and infertility.

Dolores McBride, Support Worker, Huntington’s Disease Association Northern Ireland explains the challenges of caring for someone with Huntington’s Disease.
Huntington's Disease (HD) is an inherited condition that damages certain nerve cells in the brain. This brain damage gets progressively worse over time and can affect movement, cognition (perception, awareness, thinking, judgement) and behaviour.

Early features can include personality changes, mood swings, fidgety movements, irritability and altered behaviour, although these are often overlooked and attributed to something else. Approximately 130 people are known to be symptomatic with HD in Northern Ireland with more undiagnosed and many hundreds at risk of developing the disease. People live with the disease typically for 5-20 years from the onset of symptoms until they become entirely dependent losing the ability to move, speak or swallow unaided. There is no cure yet.

How do you feel about discussing death and dying? Do you think it is too morbid and sad? Or, do you think it would be good to have more opportunities to discuss what you would want, if you or a person close to you was faced with a terminal illness?

How much or how little people want to talk about dying is a very personal thing. In recent years, dying and end of life care have been topics people seem to be more willing to talk about. For a long time, these things were considered taboo, but it looks like that is changing - people like Lynda Bellingham raised a lot of awareness about death and dying during her illness.

Without communication and understanding, death and terminal illness can be a lonely and stressful experience both for the person who is dying and their family. We know there is a willingness to discuss dying 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. They say we need to get rid of the barriers that prevent us from talking about death and dying.

The All Ireland Institute of Hospice and Palliative Care (AIIHPC), with the Public Health Agency are having a workshop for people to give their views on death and dying. The workshop will be held on Monday 21st September 2015 in Jury’s Hotel, Belfast at 10:30am - 1:30pm followed by a light lunch.

Would you like to attend? Email This email address is being protected from spambots. You need JavaScript enabled to view it. or call 028 9027 9375 to book your place.

Courtesy of Client & Patient Council

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Did you know its estimated that one third of babies born in 2013 will live to be 100 or more? We are all living longer and the number of older people living in the community is set to increase vastly over the coming years. This is something to be celebrated as older people have so much to contribute to society, including their vast knowledge and life experience which they can share with younger people. As people get older they want help to live in their homes. This is known as domiciliary care.

Commissioner for Older People for Northern Ireland, Claire Keatinge hosted an event called Domiciliary Care Summit: What needs to change for older people this week.

Older people, carers and stakeholders including Health and Social Care workers and politicians attended. It was interesting to hear that in Northern Ireland at present Health and Social Care services provide:

250,000 hours per week of domiciliary care
Domiciliary care for 25,000 people
£206,000m per annum for domiciliary care
It is estimated this will need to double in the next twenty years.

Guest blogger, Tom Hunter lives in Islandmagee. In 2008 Tom was diagnosed with relapsing remitting multiple sclerosis (MS). Tom shares his MS journey and explains why getting information and support is so important.

‘When I was diagnosed with MS it was a shock. Looking back I’d probably been living with common MS symptoms - such as pain, fatigue and blurred vision for years - but I never expected a diagnosis of MS. I was always tired. But I was working as a broker in London and I just put it down to working in a fast paced job and tried to carry on as normal.

I decided to take a break and move home to Northern Ireland for a less stressful life but my symptoms continued. I had terrible double vision and kept falling over. Like many men, I wasn’t the best at keeping regular check-ups with my GP but as soon as he saw me, I was sent straight to the Neurology Unit at the Royal Victoria Hospital. I was poked, prodded, scanned and reviewed and then the Doctor said “Mr Hunter you have multiple sclerosis”.

I didn’t know anything about MS then but thanks to the fantastic MS nurses, Consultants and the MS Society I’ve come to understand my condition better. MS affects more than 4000 people in Northern Ireland and like me, every one of them lives with the uncertainty of life with MS. MS attacks at random and it can be cruel. One day I can feel fine, but the next I could lose my sight or be unable to walk.

Since the Health Secretary in England, Jeremy Hunt said he is prepared to remove ‘opt-out’ from weekend working for newly qualified hospital doctors, there has been a lot of public discussions on hospital cover at weekends.  Patients and professionals alike, have a lot to say on this issue. 

The announcement has also sparked debate here within our own Health and Social Care service. People in Northern Ireland would welcome 7 day working for hospital consultants.  Patients want access to the same level of care whether that’s 9am on a Tuesday or lunchtime on Saturday.

There are several advantages to this way of working. Patients could receive direct consultant input at all times. Care would not be reduced at weekends or out of hours, and in addition trainee doctors would be under close consultant supervision at all times. The current situation can led to delays in decisions about care including discharge and admission which results in waiting times increasing elsewhere in the system.

Nurses and other Allied Health professionals currently provide around the clock cover and many hospital consultants who have adopted 24 hour working find there are many advantages including greater job satisfaction.

You might have heard in the news this week, waiting times for treatment and care continue to rise, but can anything be done to change this?

A number of years back we had very lengthy waiting times for specialities such as Orthopaedics and considerable work was done to reduce these. However, the situation is rapidly deteriorating.

On a daily basis people call the Patient and Client Council looking for help to establish where they are on the waiting list. The Health and Social Care Board publishes statistics regularly which demonstrate the performance against targets is worsening. We have been raising the issues on waiting times with the Health and Social Care Board and the Health and Social Care Trusts, yet it is difficult to find a solution.

Behind every statistic is an individual, and family whose lives are affected by having to wait. It is hard to hear the very real stories patients are sharing about the health, emotional and economic impacts of waiting.

Allow me to introduce myself… My name is Chloe McMahon and I am a second year Health and Social Care Policy student at Ulster University. During the course of the next four weeks I will be completing placement with the Patient and Client Council. In this time, I am fortunate enough to be acting as a guest blogger on the Patient and Client Council’s blog, which I hope you will enjoy.

Dementia is something which affects many families in Northern Ireland and we only have to look at people’s experiences to see that. Last summer I worked as a care assistant, where I cared for dementia patients on a daily basis. Arriving on my first day of on-job training, with no experience of dementia of any kind, I had all sorts of expectations in my mind (plenty of knitting, episodes of Deal or No Deal on loop, being referred to as ‘dear’ and ‘lovie’, and lots and lots of Werther’s Originals). Instead, the reality of dementia hit me like a freight train. My first encounter with dementia saw me using the excuse, “I’m just popping to the loo to wash my hands” and secretly using the privacy to cry my eyes out. As I grew close to all the patients, I gradually accepted the quirks that came with their condition and no longer became upset.

For some people, self-service screens are a handy way to check in at airports, for others it’s an easy way to update library books. Have you used a self-service screen to check in at your local GP surgery or hospital outpatients department? Did you find it easy to use?

Some people like using these check in screens, but others prefer a personal interaction and would rather check in with staff when they arrive for appointments.

Often people are already feeling worried about their appointment, so having to use these screens can add to their anxiety. There is also a fear among patients that if they don't use the screens correctly, they could be forgotten about as people will not know they are waiting.

Eventually using these screens will become easier for people just like booking a flight or online banking. Others, including people who are frail, vulnerable and visually impaired, might still prefer to speak to someone, who can welcome them and answer any questions. Technology cannot replace an often much-needed conversation between patients and staff.    See comments...

Courtesy of Client & Patient Council

Long waits in A and E aren’t something any of us want to experience, but unfortunately we know many people do.

We are working with the Health and Social Care system to make sure patients’ voices are acted on, to improve experiences for everyone who attends A and E. One of the discussions we are having is about information for people to help them make decisions about care when they need it.

Hospitals in England publish information on waiting times in Emergency Departments on their websites, so its available to everyone and people can know wait times before they go.

This type of information is not currently available in Northern Ireland.

Do you think it would be useful?
What other information about Emergency Departments would be helpful?
Maybe how long you might have to wait for an ambulance?

Please let me know what you think so we can include your ideas in this work - You can view comments or add yours here

Read more about this work

Courtesy of Client & Patient Council

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