“Lives are being ruined”

LACK of care and financial hardship, report patients from the North West in national survey.  Families with rare illnesses in the North West are experiencing severe financial hardship and many are seeing loved ones’ lives ruined due to a lack of specialist care, according to the first ever national patient survey published by the Muscular Dystrophy Campaign.

Launched ahead of Muscle Awareness Week (20 – 27 September), the survey State of the Nation reveals that patients in the North West are losing out in a postcode lottery and are being denied necessary health and social care services. Individuals are being forced to pay for their own wheelchairs and many family members have to provide full time care for years on end without any respite support. There are 6,700 people in the North West with muscle disease.

State of the Nation, focuses on quality of life and the financial impact of living with a rare illness, essential equipment, carers, the move from child to adult services and access to healthcare. It reveals:
* 75% face financial hardship;

* over 50% fund their wheelchair out of their own pocket or thanks to a charity with half experiencing delays or difficulties in receiving the appropriate chair;

* 50% of carers feel their needs are not being met, with two out of three have no access to respite care, like a hospice or care home;

* 66% of patients rated their transition from child to adult services as either poor or very poor;

* 50% of respondents said that their experience of the diagnosis process was either poor or very poor.

These results come three years after the Government’s National Service Framework for Long Term Conditions, which pledged to improve quality of life and independence for people living with chronic conditions.

Commenting on the survey results, Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, said:- “Our survey reveals that there are significant inconsistencies in access to vital specialist care across the UK. For some families in the North West access to specialist care can be a matter of life or death. Their plight is made worse by the considerable delays and variations in the provision of essential equipment and barriers to living independently.  It is clear that health and social care services are patchy, complex and confusing. The report shows that three quarters of patients and their families in the North West have no access to a key worker or care co-ordinator, whose role is to support and guide them through the system. We are calling on the NHS and local authorities to urgently establish additional post in the region.  The families’ experiences identified in our report underline that urgent steps need to be taken. The time for talking is over. Action is needed now.”

Results in more detail with some sample case studies:
Case A: 1 female from Liverpool has a wheelchair that is ten years old and falling apart. She has been trying since October 2007 to change the chair. Local wheelchair services keep telling her that they are looking at other chairs for her and she can go and try them. Unfortunately, this never happens and they keep bringing out the same chair and she keeps on sending it back. She said:- “I have had no chance of trying another chair. I need a different type and shape of chair now, no-one is listening and it’s soul destroying.”

Case B: A patient from Lancashire, who has moved homes in the last two years, has gone from receiving excellent all round care and ongoing help and advice, to virtually nothing.

Case C: Some patients are lucky enough to be able to receive specialist physiotherapy at the Neuromuscular Centre (NMC) in Winsford. One person who travels to the charitable organisation, which is a part of the Muscular Dystrophy Campaign, to receive specialist physiotherapy, said:- “I feel very lucky as I live relatively close to the NMC. Some people make long journeys to use the facilities there and they all seem to go away with positive experiences. They wouldn't need to do this if there were suitable services nationwide.”

Case D: A man from Cheshire commented:- "My wife feels very put upon. The expectation that all her effort is freely given and unrewarded, and on top of her full-time job to deal with."

There is currently only 1 muscular dystrophy care coordinator, based at the Alder Hey in Liverpool. The charity is calling for additional key workers or care co-ordinators for families living with muscle disease in the North West, as well as an urgent review to be undertaken by the North West Specialised Commissioning Group.  

LEADING CHARITY ASKS LOCAL COUNCILLORS – ‘DO YOU KNOW WHO YOUR CHILDREN ARE?’

LOCAL COUNCILLORS across England are being urged to take on the responsibility they hold for children in care, as part of a new campaign from the Fostering Network called, ‘Do You Know Who Your Children Are?’.

From this week the Fostering Network will be working with local foster care associations to make councillors aware that they are legally responsible for the well-being and development of children in care, regardless of whether they are directly involved in children’s services.  The aim is for councillors to recognise they should treat children and young people in care as they would their own children, and that councils need to work more effectively across the range of issues that impact on their development.

A series of postcards will be sent out asking councillors if children in their ‘corporate’ care are getting the help they need at school, if they are in suitable accommodation and if foster carers have enough support.  Foster care associations will then set up meetings for councillors with local foster carers to hear the challenges they face and what councils can do to help. An information pack, including a guide for councillors on how to be a good ‘corporate parent’, will also be available.

Vicki Swain, campaigns manager at the Fostering Network, said:- “We believe that every councillor in England has an important role to play in helping children in care to thrive, particularly by supporting the work of foster carers, social workers and others who help to turn their lives around.  With this campaign we are encouraging councillors to accept responsibility for the development of children in care, to prioritise the needs of children in all decision making, and to support their growth until a successful transition to adulthood.”

Around 37,000 foster families look after more than 42,000 fostered children on any one day in England.  The Fostering Network is the UK’s leading charity for all those involved in fostering, and exists to ensure that fostered children receive the highest standards of care. It has offices in Belfast, Cardiff and Glasgow, as well as London.

Cosmopolitan reveals the British women playing fertility roulette

AN increasing number of women are taking risks with contraception because they are scared they are infertile.

Cosmopolitan investigated this disturbing trend and found that doctors are seeing a worrying increase in young women who fall pregnant after wrongly believing they can’t conceive, due to reports that infertility is on the increase.

Whilst it used to be that women in their twenties and early thirties worried they would become pregnant when they weren’t ready, some women are so scared they won’t ever be able to have children, they’re taking desperate measures – even getting pregnant to ‘test’ their fertility.

“Recent headlines about rising infertility rates have resulted in a growing number of women playing Russian Roulette with their contraception.  We want to put women’s minds at rest by giving them the true picture. It is essential that contraception is taken seriously and is always at the forefront of their minds." said Louise Court, Editor of Cosmopolitan.

"In sexual-health clinics, we’re increasingly seeing women in their twenties not using contraception.  When we ask why, they say, ‘I don’t think I can have kids', but, often, there’s no reason for them to feel this way. Women used to be scared of getting pregnant – now, many are scared they can’t, and are willing to take risks.” said Dr Catherine Hood, Sexual Health Expert.

In truth, the average woman is still unlikely to have major problems conceiving - 85% of all couples will conceive within a year and 95% within two years – meaning the majority of women are able to fall pregnant. In fact, in 2007, fertility was at its highest rate for 34 years.

The full story appears in the October 2008 issue of Cosmopolitan. Here, readers will also be able to find advice on the right contraception for them and how best to preserve their fertility.

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