Losing Grace by Robyn Langton

“A grandmother is a little bit parent, a little bit teacher, and a little bit best friend.”

Who remembers that mad feeling of excitement when you were told as a child that you were going to stay with Granny and Papa? As a child growing up, I was very fortunate to have wonderful grandparents around me to support my parents, provide me with unconditional love – and lots of sweeties on the sly. Along the way, as is life, I have lost all of my beloved grandparents, my Granny Grace being the last, saying goodbye at the age of 77. Some people are not lucky enough to know their grandparents, however more and more are able to enjoy them for longer as demography changes and people are living longer. My Granny was incredibly independent, never relying on health or social care apart from the odd trip to her GP and was still going swimming twice a week and ‘raking around’ in her 70’s. Grace was one of life’s treasures, incredibly sweet and kind to everyone around her.

In summer 2010, my Granny began to change and not quite seem herself. Living just up the road from us, she regularly popped in to visit (and secretly do some of my chores Mum had left me) and I distinctly remember one day when she left, she lost her balance on the steps and I watched as she slowly made her way back up the street. Another incident happened when she fell backwards over into the bath (thankfully empty!). These incidents seemed to be happening more and more often and Grace consulted her GP several times; without any diagnosis or medication being prescribed.

It got to the point that my Granny’s loss of vision and mobility was so severe that it made it unsafe for her to be at home. When the family took her up to the hospital to get checked over, Grace was almost blind and needed to use walking sticks. My Granny was admitted to the ward in September. Lying in her hospital bed she was no longer the chatty woman that went out of her way to help everyone else, she was in desperate need of support herself to get changed, move around, go to the toilet, and she had to be fed. A very fit and healthy lady had suddenly turned into a frail, dependent ‘patient’ at DGRI in Dumfries and Galloway. It was terrifying watching the person we knew and loved so much slip away so quickly – we were losing our Grace along the way. Eventually we were told that Grace had developed a neurological condition and they thought this could be something called Creutzfeldt-Jakob disease (CJD) but couldn’t be sure. A specialist team from the National CJD Unit in Edinburgh came down to undertake tests, and confirmed that my Granny had sporadic CJD.  My Granny died less than 4 months after first displaying the symptoms, in November 2010.

CJD is a rare neurodegenerative condition that affects tissues in the brain, nerves and spinal cord. Despite being the most common form of CJD, sporadic CJD is still very rare, causing 1-2 deaths per million worldwide every year. I always said my Granny was always one in a million.

Symptoms of CJD include:

• loss of intellect and memory
• change in personality
• loss of balance and co-ordination
• slurred speech
• visual disturbance and blindness
• abnormal jerking movements
• progressive loss of brain function and mobility

It was a difficult and distressing time for the family, as is any serious illness. However, this was made more difficult in the agonising time it took for her diagnosis, and the lack of knowledge around how to manage this condition due to it being so uncommon. This was also not helped by the stigma attached to this disease.

There are various strands of CJD. CJD is caused by an abnormal protein, called prion, which contaminates the nervous system. Variant CJD may have been passed to humans through beef products infected with bovine spongiform encephalopathy (BSE). However, there are four different types of CJD and infection is not always the cause of this condition. For example, the cause of sporadic CJD, which accounts for 85% of all CJD cases (and the type my Granny had) still remains unknown.

The world is an amazing and fascinating place, however it can also be filled with lots of unknowns, and some scary illnesses. We need to make more of the unknowns known; and support the fantastic work of all our world researchers out there spending their days doing exactly this.

Last year, the Brain Research Trust funded two PhD studentships researching CJD and related prion diseases. I want to raise as much awareness of this disease as possible. We had no idea for months what was wrong with Granny, her symptoms began with loss of balance and forgetfulness which quickly turned into a nightmare. Whilst there is no cure for the disease just now I am hoping more research will help come up with some solutions or ways of identifying earlier so people and their families are more supported and informed and can have an agreed care plan in place.

Five years after my Granny died, I decided in November 2015 that I was ready to start talking about the disease and raise awareness amongst health professionals and the general public. Having only ever run as far as 5K, I decided to take the plunge and sign up for the Dumfries Half Marathon. I have been training for the past few months in preparation for the run on Sunday 25^th September to run 13.1 miles. It has been a bit of a bumpy ride, with several trips to Physiotherapy, Podiatry and Sports Therapy, however I figure if Grace could swim 50 lengths of Dumfries swimming pool twice a week at 75 years old, this run will be a doddle.

Any support would be greatly appreciated. Thank you.

www.justgiving.com/robyn-langton
Click here for more info http://www.brt.org.uk/creutzfeldt-jakob-disease-cjd

http://www.nhs.uk/Conditions/Creutzfeldt-Jakob-disease/Pages/Introduction.aspx

Robyn Langton is an Integration Support Officer for NHS Dumfries and Galloway

Opening Doors by Shaben Begum

The Scottish Independent Advocacy Alliance (SIAA) has recently launched an animated film Opening Doors which shows the difference that independent advocacy can make to the lives of parents going through child protection procedures.

Opening Doors follows 3 characters, Laura a young woman with learning difficulties who is pregnant, Ahmed who has a young son and has issues with alcohol and Teresa who has mental health issues. It shows how Moira their advocate helps them know and understand their rights, navigate the system, ensure they are listened to and speak for themselves. The film was made with the help of a focus group made up of parents and advocates with experience of child protection procedures. The focus group helped identify the key issues and used their experience to highlight the difference advocacy makes. Members of the focus group met with the writer to inform the script and ensure that the language was clear and accessible they also met with the animator to ensure that scenes were realistic and that characters were portrayed positively.

The whole process of producing and launching the film was a collaboration with Media Co-op who have a track record of producing high quality, award winning films with a social message.  They worked with us to recruit a professional writer, animator and cast of actors. The part of Laura was played by a woman with learning difficulties.

Intelligence we gathered indicated that advocates were increasingly being involved in advocating for parents with mental health issues, learning disabilities and substance misuse issues who were in danger of losing access to their children.

It’s not unusual for advocates to get involved in supporting people in various situations but the feedback we received showed there was a real need for advocates to know and properly understand the complexities of child protection.

The film is the culmination of our three year Families at Risk project funded by the Scottish Government Third Sector Early Intervention Fund which was administered by the Big Lottery. The initial project was designed to raise awareness about child protection issues amongst advocates and to inform social care professionals and children’s hearing panel members about independent advocacy. Phase 1 developed and delivered training specifically for advocates, providing grounding in key legislation and policy.  Alongside this, guidelines for advocates working with Families at Risk were developed in consultation with advocacy organisations. The guidelines provide a useful reference to best practice in advocacy. They also are used by people using advocacy to get clarity about what they can expect from an advocate and for professionals who want to understand the advocacy role further.

Opening Doors was launched at the Glasgow Film Theatre with approximately 100 people in the audience. The showing was followed by a plenary session made up of representatives from Scottish Government, Children’s Hearings, an independent Safeguarder and an advocate.  The discussion and questions from the audience raised interesting issues around how complex the child protection system is, how difficult parents find it to engage with and how disempowered they feel and crucially the difference support from an advocate can make for everyone involved even if the outcome isn’t what the parents are looking for.

We have received a great deal of positive feedback on the film and it has been viewed and promoted by a range of individuals and organisations across the UK.

Opening Doors will be used as part of training programmes for a range of professionals wanting to learn more about the difference advocacy can make in emotionally difficult and legally complex situations. The film is available in a number of different languages including; Arabic, Urdu, Punjabi, French, Polish and BSL (British Sign Language).

We know that there isn’t enough independent advocacy for people who have a statutory right to access it but we believe that in situations where decisions are made that have a long term and life changing impact then advocacy should be available. We believe that in the ideal world services would be person centred following a human rights based approach so that no one needed the support of an independent advocate but until that day arrives we believe that where families are going through child protection procedures then both parents and children should have access to separate advocates.

Some facts about independent advocacy in Scotland

Research carried out by the SIAA shows that during 2013-14 £11.3 million was spent on advocacy. There are advocacy organisations in every LA area in Scotland and during 2013-14 over 27,000 people accessed advocacy.

Find your local advocacy organisation through Find an Advocate on the SIAA website.

For more information about independent advocacy in Scotland visit www.siaa.org.uk or email us at enquiry@siaa.org.uk

Shaben Begum MBE is the Director of the Scottish Independent Advocacy Alliance

“One Small Step for Dumfries and Galloway, one giant leap for Scotland” by Wendy Chambers

The occupational therapy mental health service is stepping forward this week and sharing their implementation of the Home Based Memory Rehabilitation (HBMR) programme for people with dementia at a National event in Edinburgh.

The event “Connecting People: Connecting Support” is showcasing occupational therapists contribution to dementia post diagnostic support, with the Home Based Memory Rehab programme centre stage, primed for a roll out across 5 other Health Boards in Scotland in the coming months.

Local occupational therapy staff Wendy Chambers and Alison McKean will be presenting during the morning live link session, and also leading along with Lynda Forrest in the afternoon workshop with the 5 Health Boards. The aim is for consistency of delivery for this evidence based occupational therapy intervention across Scotland, contributing to the developing evidence base and promoting best practice in post diagnostic dementia care

The event is being live-streamed and can be watched again at the following link

• video3uk.com/actionondementia
• Click on the EventCast Tab and follow the link called “Connecting People: Connecting Support. Home Based Memory Rehabilitation”

Speakers in the morning also include Mary McGrath, Advanced Clinical Specialist Occupational Therapist from Belfast; current work in Scotland with HBMR is firmly based on Mary’s original research (McGrath and Passmore 2009)

A video of servicer user feedback and opinion of the HBMR programme is also being shown on this day and a link to this can be found at

• https://www.youtube.com/watch?v=VNg5HrFi4_M

This work is also being showcased on the ‘Let’s Talk About Dementia’ Blog:

• www.alzscot.org/talking_dementia

Wendy Chambers is an Occupational Therapy Team Lead at NHS Dumfries and Galloway

 

 

 

 

 

Life after Life by Thalakunte Muniraju

Why should the good things in us stop after death when there is great opportunity for life to continue after life? It is impossible to describe in words the emotional and physical trauma individuals with chronic organ failure experience. I am sure most of you have seen or come across someone whose life has been transformed for the better after organ transplantation.

Kidney failure needing dialysis reduces quality of life and survival significantly. A patient in his/her 30s with kidney failure needing dialysis has a similar chance of having heart disease compared to someone in their 80s without kidney failure. Dialysis replaces some of the functions of kidneys, but not all. Receiving dialysis is almost like having a part-time job; sometimes it can be more than a full-time job if we take into account all the dialysis-associated complications and procedures. To make matters worse, dialysis patients must adhere to lots of dietary and fluid restrictions. A friend of mine once told me that he only started appreciating the taste of water after starting dialysis.

Kidney transplantation is the only treatment which can cure and improve the quality of life and survival in these patients. Yes, kidney transplantation is not without risks and patients have to take lifelong medications to suppress their immune system. But the overall benefits are far superior to being on dialysis. Survival of transplant patients and kidneys has improved significantly – half of the kidneys transplanted from living and deceased donors are still working at 15- and 10-years respectively. One of the immensely satisfying things to see for us as clinicians is to see patients leading a normal life following transplantation.

With the exception of living donation, organ donation is only possible following a sudden, unexpected and most often premature death. We should never lose sight of the families who go through this and should do everything to support them. One of the ways to salvage something positive out of these dreadful events is through organ donation.

Three patients die everyday in the UK waiting for an organ. Over the last 10-years, the number of transplants being performed has increased substantially. Still, a huge gap exists between the numbers of patients active on the list and the number of patients being transplanted (see graphs below). The current UK strategy for organ donation and transplantation, Taking Organ Transplantation to 2020, emphasises the pressing need to reduce family refusal rates. It is disappointing that there has been no improvement in the overall consent (or authorisation) rate in 2014-15. NHS Blood and Transplant continue to devote considerable attention to improving the support that it is giving to families when the possibility of donation is raised.

On 1^st December 2015, Wales became the first UK country to introduce a “soft opt-out” system for organ donation. It will be interesting to see what impact this will have on the number of transplants in Wales in specific and subsequently, the UK as a whole. Earlier this year Scottish government said it would consider bringing forward new legislation on an “opt-out” system for organ donation.

Hopefully one day in the near future we will see an “opt-out” system in whole of UK, for the benefit of our patients with organ failure.

 

 

 

 

 

 

Registering online takes less than two minutes. After registration make sure that your family and friends know about your wishes. This is the only way to continuously increase the transplant activity, and give someone gift of life. Please consider giving life after life…

https://www.organdonation.nhs.uk/register-to-donate/

http://nhsbtmediaservices.blob.core.windows.net/organ-donation-assets/pdfs/activity_report_2014_15.pdfb

http://www.bts.org.uk

Dr Thalakunte Muniraju is a Consultant Nephrologist at NHS Dumfries and Galloway