Wednesday, 4 February 2015

NRAS launches new website for children and families affected by juvenile idiopathic arthritis (JIA)


The National Rheumatoid Arthritis Society (NRAS) today announced the launch of a new website targeted at parents and families of children and young people with Juvenile Idiopathic Arthritis (JIA), as well as health professionals involved in the care of young people with JIA.


NRAS, who are Information Standard accredited, have been working for months on the preparation of information for this new site to support the JIA@NRAS service. They anticipate that families will warmly welcome the detailed information about JIA, getting to a diagnosis and understanding how to negotiate the NHS in order to get the right care for their child/young person.

Ailsa Bosworth, CEO of NRAS said “Our aim is to provide parents, families, young people and health professionals with the best and most up to date resource in the UK on all aspects of JIA from a family/patient perspective. Getting to a diagnosis is often a difficult and sometimes traumatic process for parents and we hope that this website will help parents who are concerned about their child, to get the right help more rapidly.  We will link to other organisations and charities who provide relevant sources of help and support so that everything a parent could want to know is in one place.”

Dr Clarissa Pilkington, President of the British Society for Paediatric and Adolescent Rheumatology (BSPAR) said of the work, “We are very pleased NRAS is launching its new website for families in the UK who are living with Juvenile Idiopathic Arthritis (JIA).  This new service is very much wanted and needed by families and health professionals alike.  The reputation of NRAS is well established in the adult rheumatoid arthritis community and is synonymous with empowering, educating and improving peoples’ lives as well as campaigning on behalf of those affected by rheumatoid arthritis.  We believe they have the knowledge and expertise to successfully support families, children and young people affected by JIA and look forward to working with them on the service”

The website is in large part a response to requests for such a resource from parents, families, young people, health professionals and NHS Managers who were interviewed for the ‘A Focus on JIA’ Report which was published by NRAS at the end of 2013.

Clare Jacklin, NRAS Director of External Affairs said, “we will continue to build this resource, providing important articles, case studies and information about ‘living with JIA’, during the course of 2015 and invite families and young people who wish to get involved, to support this work”.

About JIA

Juvenile Idiopathic Arthritis (JIA) is an inflammatory disease which causes chronic arthritis in children and young people and affects approximately 12,000 children (1 in 1000) under the age of 16. The severity of arthritis can vary from mild to extremely disabling and symptoms include stiff, painful and swollen joints.  JIA is also associated with other complications such as blindness which results from uncontrolled inflammation around the lens of the eye and can also significantly delay physical development in the very young, cause permanent joint damage and deformity and delay puberty. 

The aim of JIA treatment is to achieve complete absence of disease by controlling inflammation and joint pain, reducing the number of affected joints, preventing long term damage and improving quality of life. Approximately 50% of children will continue into adulthood with active disease which remains JIA. Point of clarification:  JIA does not ‘become RA’ after the age of 16, it remains JIA into adulthood.
 
About NRAS

The National Rheumatoid Arthritis Society is ‘the voice’ of people affected by Rheumatoid Arthritis (RA) across the whole of the UK and in due course, with the addition of our new JIA@NRAS service, we hope to be so for Juvenile Idiopathic Arthritis (JIA). Founded in 2001, we are the only UK charity devoted specifically to RA and JIA. We provide help, support, information, education and advocacy and in respect of RA, supported self-management programmes.

About the Information Standard

The Information Standard is a certification programme for all organisations producing evidence-based health and care information for the public. Any organisation achieving The Information Standard has undergone a rigorous assessment to check that the information they produce is clear, accurate, balanced, evidence-based and up-to-date.

For more information about NRAS and JIA@NRAS please contact:

Ailsa Bosworth

Chief Executive

NRAS

Phone: 0845 458 3969
 
 

 
 
 
 
 
 
 
 
 
 
 
 

Thursday, 18 December 2014

Julia's House receives £5,000 in donations following tree light theft

 
Julia’s House received an astonishing £5,000 in donations following the theft of Christmas lights from outside its children’s hospice in Corfe Mullen.
Thieves stole ground lights from the entrance and took an electrical connection box after slashing through cable, wrecking a display of tree lights.
As the news of the theft spread, donations started coming by hand, over the phone, via the Julia’s House website and through a JustGiving page set up by supporter Steve Mullins on the charity’s Facebook page.
The largest single amount was an anonymous donation of £1,000. Another £100 came in from AFC Bournemouth midfielder Harry Arter who said:  “I know how much Christmas means to kids, so to see someone do such a horrible thing and me being in a position where I felt I could make a difference I thought it would be nice, especially at Christmas.”
 Hospice staff were especially touched by the kindness of passers-by. One man came to the door and handed over £100 in cash – money that had been intended for repairs to his car. He told nurses: “The children need this more than I need to use my car. The car can wait.”
There were many individual donations of household Christmas lights as well as a bulk delivery from B&Q in Weymouth. One lady even pitched up with cakes for the care team.
More lights and equipment were donated by local companies AEC Electrical and Kew Electrical. A team from AEC Electrics replaced the cabling and junction box and put up the new lights in time for a special weekend care session.
Hospice lead nurse Louise McKenna said: “The response has been truly fantastic. The overwhelming kindness of people with all the donations and messages of support has really lifted the spirits of everyone at the hospice. We can’t thank people enough for supporting us in this special way. The new lights look wonderful.”
 

Wednesday, 10 December 2014

Review - Robin Hood. Poole, Lighthouse


CBBC’s Ed Petrie takes on the role of Robin, Ed is joined by Tom Bright as Friar Tuck, who also writes and directs the Lighthouse panto for the third year running. Tom is one of the country’s top pantomime directors and is responsible for writing and performing the song for popular 1970s children’s television series Tiswas.  He has appeared on TV in a number of comedy series alongside the likes of Mike Reid and Russ Abbot. The role of the dastardly Sheriff of Nottingham is played by Patrick O’Kane (Game of Thrones, The Borgias, Jamaica Inn) .Back by popular demand are Lighthouse favourites Neil Smye and Dan Looney, whose comic timing and ability to get audiences crying with laughter has become synonymous with the Poole panto.  Local actresses Stephanie Walker and Alicia Woodhouse take on the parts of the Woodland Fairy and Maid Marion respectively. 

Non-stop thrills and spills are the order of the day as Robin takes on his arch-rival the Sheriff of Nottingham and still finds time to catch the eye of the beautiful Maid Marion in this classic tale.

We went to see this panto last night and really enjoyed it, Tom Bright was very funny as Friar Tuck and he got the most giggles from the children but also provided lots of jokes and comedy for the adults. Lots of hissing and booing at the grumpy Sherriff and we loved the fun pairing of Bill and Ben. The show keep us entertained from start to finish with lots of slapstick comedy, audience participation and brilliant dancing, the dancers were exceptional and we found it hard to take our eyes off the little girl who played Jill, such a little star!  Fabulous fun show for all the family.    

This is one panto you won’t want to miss, and we have a competition to win a family ticket!
 http://local.mumsnet.com/Talk/local_dorset/2240685-WIN-Family-ticket-to-Robin-Hood-Panto-Lighthouse-Poole

Monday, 1 December 2014

Review - el RHEY ColourMe Wellies

ColourMe Wellies

 
ColourMe Wellies are fun, fresh and functional customisable wellington boots for kids that are set to redefine rainy days forever!
Made with high quality natural rubber, the designer wellies are available in sizes 11 to 1. The Gift Pack includes a pair of Moth or Zebra ColourMe Wellies, 3 vibrant art markers for your little one to create their original pair of wellington boots and an educational colouring book on African animals and bugs.

We were very excited to receive this lovely colourful gift set through the post. There are two sets to choose from each with a different design, moth and zebra.

 
The set contains the wellies, 3 marker pens and a colouring book, all packaged in a lovely box.
 
 
This set was reviewed by an 8yr old girl, she is very creative and loves to colour and draw and really liked the idea of the colouring book in the box. The pictures on the wellies and the book have lots of detail and although she had hoped there would be more colours to choose from she soon got to work and began to colour in. I think the 3 colours look quite effective.
 



The 5yr old decided to colour in some of the pictures in the book with the pens but the marker pens went through the card so these may be best kept just for the wellies. Both girls were keen to colour in some of the animal pictures.
 
 
 

When both wellies were completed the 8yr old was very proud of her creation and put on the wellies to show everyone. She said she really liked the set and loved the idea that there wouldn't be anyone else with wellies just like these.
 
A lovely and unique gift idea for a creative child.
 
el RHEY is a specialist rainwear designer and wholesaler based in Bournemouth, UK. The el RHEY Kids label represents an original and creative children’s rainwear collection that is available for purchase here.
 
 

Saturday, 29 November 2014

Shared Carers sought across Poole

Could you help make a difference to disabled children and their families in Poole? Borough of Poole’s Shared Care scheme is actively seeking more local people to get involved with disabled children in their community by providing regular respite care.
Under the Shared Care scheme, families, couples or individuals invite a disabled child into their home and care for them for regular short periods. For parents of a child who is disabled short breaks can be essential, allowing them to catch up with simple tasks like going shopping, spending time with other children, or having an evening out together, knowing they can relax and that their child is with someone they know and trust.

Shared Carers give children with disabilities the chance to make new friends, develop more independence and have new experiences away from home in a secure and familiar environment. There are currently 22 Shared Carers in Poole, but many more families of disabled children are looking for a break. Shared Carers with a spare bedroom are particularly needed, who can offer monthly overnight care at weekends and during school holidays. People who are able to offer regular day care at least twice a month are also needed.

Cllr Janet Walton, Cabinet Portfolio Holder for Families and Young People, Borough of Poole, said: “As a carer you are helping another family in need, but your own family can also learn about understanding special needs and make rewarding new friendships. It can be an amazing experience, and one which many of our families really need.”

People from all ages and backgrounds are needed - they can be older or young, in a partnership or single, retired, unemployed or working. They may or may not have children of their own, or their children may have left home. Experience of children with disabilities can help, but it is not essential as full training and ongoing support is provided. Carers are also paid a specialist fostering allowance, but there is no charge to the child’s family. 

Tracey Bulgarelli has been a Shared Carer since September 2009, and provides care for Brecon, a lively 7-year-old boy with a rare genetic disorder similar to autism, as well as severe epilepsy.  Brecon needs to be monitored 24/7 as he has a very high pain threshold, no fear and no sense of danger. Tracey and Brecon have developed a close relationship where Brecon has new experiences in a safe environment, and Brecon's family are able to take the time they need together. 

Tracey said: "Working as a Shared Carer is rewarding and fulfilling, knowing that you are able to give support and respite to a family and enable them to spend some quality time together safe in the knowledge their child will be having fun and being cared for.”
 
Brecon’s mother, Lucy Parr, added: “Brecon is a beautiful boy who unfortunately has many challenges in life. Because of this he needs one-to-one care, and obviously for a family with four children and two full-time occupations this is a very hard balance to strike in ensuring everyone gets the support they need to thrive. When Tracey has Brecon, it gives our whole family some breathing space and time to function as a typical family would. 

“I also know that Brecon is getting the very best care and his various complex needs are being met. He has developed an amazing relationship with Tracey and it’s incredible to see him so happy after spending time with her. From the point of view of families receiving this service, I cannot over-emphasise how vital it is in maintaining ongoing sanity and a slight sense of balance in the otherwise chaotic life that comes with having a disabled child. If you feel you could offer this to a family and their child, please get in touch with the team.”

Amanda Harriskine, Senior Practitioner for Shared Care, Borough of Poole, said: “As we can see from the example of Tracey and Brecon, becoming a Shared Carer can be an immensely rewarding opportunity. We’d encourage anyone interested to get in touch, and see how they can make a real difference to another family in a way that fits in with their own lifestyle.”

For more information about becoming a Shared Carer in Poole please contact the Poole Shared Care Social Workers on 01202 714640 or visit www.boroughofpoole.com/sharedcare  

Wednesday, 26 November 2014

Review - Carddies, the Card People to Colour and Go

 

Carddies - lots of fun in a small box!

 
We were given the opportunity to review a set of Carddies, the card people to colour and go, and we chose the school set.
 
When the set arrived my 5 and 8yr old daughters were keen to see inside. 
The set contains everything to keep a child occupied and is well thought out, I showed them what the stands were used for and off they went, needing no more input from me.
 
 
 
 Both girls love to colour but I did think this may interest the younger child more, however I was pleasantly surprised to find the set held the attention of both of them for almost two hours!
 

Reluctantly the girls had to pack away as it was time for homework but they were able to put the pieces back in the box with ease.
 

We asked the 8yr old what she thought and she asked for some more for Christmas! We think the sets would make a great stocking filler or something fun to slip in the bag on a long journey.
 
 Carddies are available to buy from their Amazon store at RRP of £8.99.  12 sets to choose from including Carddies London, Sports, School, Fairies, Cavemen, Football, Ballet, Knights, Family One and Two, Farm and Nativity, Carddies suits both girls and boys aged 3 to 10.  
 
SPECIAL CHRISTMAS OFFER (promotional code XMASOFFR) on orders placed before 31 December 2014 (while stocks last):
 
  • Save 10% when you purchase 1 Carddies set;
  • Save 15% when you purchase 2 or 3 Carddies sets;
  • Save 20% when you purchase 4 or more Carddies sets.
 
To receive this discount enter code XMASOFFR  in the “Gift Card and Promotional Codes” box at the checkout when placing your next order from the Carddies own store at Amazon (http://tinyurl.com/no4nhn8 )

(Postage is payable to Amazon under their usual terms and conditions (a minimum total spend of £10 is required for Free Super Saver delivery).

Monday, 24 November 2014

WIN - Family ticket to Robin Hood Panto. Lighthouse, Poole.





Join in with adventure, laughs and surprises this Christmas with Robin Hood and his band of merry men in Lighthouse, Poole’s fun-packed traditional panto from Friday 5 December – Sunday 4 January.

Starring CBBC's Ed Petrie (All Over the Place, Marrying Mum and Dad) as Robin, Patrick O'Kane (Game of Thrones, Jamaica Inn) as the Sheriff of Nottingham and Tom Bright (who also writes and directs) as Friar Tuck.

There are non-stop thrills and spills as Robin takes on the evil Sheriff of Nottingham and still finds time to catch the eye of the fearless Maid Marion in this classic tale for all the family. With a superb cast, sing-a-long tunes, stunning dancing, slapstick, silliness and lots of chances to join in, Robin Hood is the perfect festive entertainment this Christmas.

www.lighthousepoole.co.uk

To be in with a chance of winning a family ticket (admits 4, minimum 1 child) on Saturday 3 January at 3pm, please post the answer to the following question below.

What is the name of the lady that catches Robin Hood's eye?

A. Matilda
B. Marion
C. Miranda

A winner will be chosen at random and announced on 22nd December. Winner will be notified by PM and a response is required within 72 hours. Failure to respond may mean the prize is redrawn.

Click here to enter