Whilst new therapies are expensive for children and adults with ultra orphan diseases the number affected in England are usually in the tens and never total more than 500 affected individuals. These ultra rare diseases affect many organs of the body and usually result in death in childhood or early adulthood. Today even though the European Medicines Agency gave Marketing Approval for an Enzyme Replacement Therapy for children and young adults with MPSIVA, Morquio disease in April 2014 and the health departments in France, Germany, Austria, Italy and even Turkey are paying for Morquio sufferers to receive Enzyme Replacement Therapy, 77 children and adults in England are denied Enzyme Replacement Therapy and to be treated at home.

Like many other people who watched the news on Wednesday 5th November, I was shocked by the article on children and young adults with autism locked away by councils in institutions across the country, far away from their families, where they were bullied and mocked by staff and in one case attacked by a fellow inpatient with a history of committing murder. As a nation we should protect these doubly vulnerable young people: under age and with mental health issues. We need to increase spending in this area so that preventative care can be given in the community; so that care homes are radically improved, and made available locally where needed; so that the people working in them can be properly vetted (salaries in the care industry generally need to increase hugely - not just those of managers, but workers on the ground) and finally so that there are sufficient facilities that children can be housed according to their needs, e.g. children with records of violence (especially of murder) housed separately to those without histories of violence. If bullying does take place the staff involved should be sacked, not simply 'retrained', but this can only happen if staff are paid a higher wage, their working conditions improved and there isn't such a dearth of people in the sector. On a separate but related note: the law which prevents parents from visiting their own children in these institutions should be reconsidered.

i have been a carer since 1993 with very little recognition or reward is time for this to change as the 6.5 million carers save the government 120 billion per year this Government will have saved 600 billion by the election by denying carers what all other workers have. its time that changed for good

NHS England are stewards of the NHS's £95 billion budget. How it spends our money matters. We know that roughly two thirds of its budget goes to local groups to buy care, with the rest spent centrally by NHS England on mainly specialised and primary care services. However, unlike other government agencies, NHS England has never published details of where its money is going. Since May 2010, government departments and their agencies have published monthly reports on all their spending over £25,000. This was a commitment to transparency that would allow taxpayers to see where money is being paid out and what it is going on, so that we could better judge if it is being spent wisely. This meant that we could see, for example, the amount of money the Department of Health paid to management consultants; how much was finding its way to companies with strong political links; and whether unpopular policies were draining resources. Other NHS bodies, like the regulator Monitor[1], regularly tell us how they are spending our money. But, in the two years since it was established, NHS England has never once published this data. NHS England says it is committed to transparency. And it is fast opening up and sharing other data on health services, including our personal data. NHS chief, Simon Stevens claims that NHS England “has set new standards for openness and transparency in all of its operations, compared with what went before.” This is not the case. In August NHS England said it would publish its spending data in September. Then it said by the end of October. It has yet to publish it. Don’t let NHS England kick the can down the road. Tell them that you want to see how it is spending our money now. Thanks to pressure from 38 Degrees, earlier this year NHS England made a commitment to publish details of its top executives' meetings with private companies. We can put pressure on them now to do what they should have been doing all along: tell us where the money is going. We are repeatedly warned about the NHS’s dire financial situation. We hear of hospitals facing bankruptcy, services being rationed, and the need for massive savings to be made if the NHS is to survive. But first, we need to see that the stewards of the NHS budget are spending with care and where it matters. Tell Simon Stevens to come clean about how NHS England spends our money. Notes [1] Monitor spending over £25,000, April 2010 - June 2014: http://data.gov.uk/dataset/financial-transactions-data-monitor

So that silence cannot be bought by managers of the NHS for their own benefit. For example, the Baby P case.

This effectively removes the main option for exercise in the local area for anyone without a considerable income (whom already have many private fitness options). There are no other alternatives in Saltash. It will add to the UK's obesity problem, effectively costing the council more in the long run. It's a terrible idea that isn't thought through at all, this ruthless cost cutting jeapordises the health of Saltash residents.

Latest Update: The first specification outlines have been released and it is still 70% theory! Now it is 60% Exam 10% written coursework and still only 30% Practical! Following the consultation regarding changes to GCSE PE (in which the opinions of PE teachers seem to have been completely ignored) the government are forcing incredibly damaging changes to GCSE PE which will have far reaching impacts right down to year 7 PE lessons. They have decided that the course will change from the current 60% practical 40% theory to 30% practical and 70% theory! This change will almost completely take the physical/practical aspect out of Physical Education. They are also proposing to massively narrow the activities that students can use as the practical element (moving to a much more traditional / Public school offering of activities). The impact of this will mean a narrowing of the activities offered by secondary schools which will feed down through the year groups. The move to an almost solely theoretical course will also have an impact on the activity level of students in PE lessons, due to schools trying to maximise the performance of students by focussing much more on theory lessons rather than actually being physically active and taking part in sport. This will have long lasting and damaging effects on the health and fitness of future generations. The changes will also take away another avenue for students who are less academic to be successful and get a qualification in an area that they may wish to follow as a career. If these changes go through then many schools may choose to no longer offer Physical Education as a GCSE and the change to the GCSE PE course may well be the final nail in the coffin for physical education in secondary schools, if people do not force a change of direction.

Many patients are very anxious about the future of their local hospital, particularly after various media disclosures, including the announcement that 1,000 beds in hospitals across the city (of Birmingham) are due to be axed! Our campaign group, Save Good Hope’s Local Services, brings together local people who use and care very much about our local hospital, Good Hope, in Sutton Coldfield, West Midlands. We are independent of any political party and are campaigning to stop the closure of key departments at our hospital. Closures of key departments at Good Hope Hospital could be the start of a slippery slope: in many areas of England, hospitals have already either been downgraded or even closed. One of our main aims, as stated in an earlier petition, has recently been successfully achieved. A public meeting to discuss the Trust’s proposals finally having being held in October, after much campaigning! And now we are calling for people across Birmingham to say NO to the closure of key departments at the hospital. These were revealed in the Trust's document (before the consultations had even finished!) as the following: 1. The transfer of Trauma FROM Good Hope to Heartlands Hospital; 2. The transfer of Orthopaedics, Ophthalmology and Colorectal Surgery FROM Good Hope to Heartlands and Solihull, both great distances to travel for many people and particularly difficult for carers and those they care for, the elderly, very young and disabled. In response to concern already expressed by many people at the ongoing consultations regarding transport, the Trust have suggested the equivalent of `taxi’ ambulances so to speak. But who would pay for this? Even if it was to be the Trust, how long would they actually pay before saying they had run out of funds? Would patients then be expected to pay, including those from other areas even further out, such as Tamworth & Lichfield? The Heart Of England Trust has been reported in the media as being the highest earning Trust IN THE COUNTRY from car parking charges, netting an annual profit of nearly £4million! At the public meeting, one of our campaigners asked the Trust why and if that money could be used to help keep our hospital services local? At present, it is obvious that this Trust STILL lacks openness, transparency and empathy with patients. They need to really start to `think like a patient’, because at the moment, they don’t.

The Bill would rewrite the rules that force market tendering of services and that are seeing millions of pounds wasted on competition lawyers that should instead be spent on patients.

They are to the best of my knowledge the only producer of guaranteed nut free bakery products available in the UK's big supermarket chains. The decision to remove this status will mean that anaphylactic customers who have traditionally made up a significant proportion of their customer base (and who adore their cakes etc) will be at risk of potentially fatal allergic reactions should they continue to use their products after the change.

Currently there are hundreds of day centres up and down the country who are providing day care for thousands of patients. Many of their customers are disabled but the facilities that they have do not readily reflect this. As there is no national inspection team for these units at present, they do not have the incentive to provide full disabled facilities. If an annual (or more frequent) inspection were to be carried out by CQC then shortcomings could be highlighted to the governing body or local authority and provision made for the facilities to be upgraded. My wife has attended one such centre catering for Alzheimer's and other dementias for a number of years. She is wheelchair bound as she cannot maintain her own weight and has had to leave as they do not have adequate hoists or, indeed, a disabled toilet.

The "NHS Bill 2015" campaign is calling on all General Election candidates to sign up to the new "NHS Reinstatement Bill", and is already attracting cross-party support. The “Campaign for an NHS Reinstatement Bill 2015" has produced an “NHS Reinstatement Bill” which sets out the legal steps needed not only to reverse the failings of the Health & Social Care Act 2012, but to fully restore the NHS in England as an accountable public service. Unless we all keep the pressure on MP's of all parties in the run up to the next election, our voices will be lost in the spin, sound bites and agendas. We were fooled in 2010 by false the promise of no NHS re-organisations. With the secret TTIP negotiations ongoing, now, more then ever, everyone has to make their voices heard regarding the NHS. Please contact your MP and prospective parliamentary candidates and ask them to support Professor Pollock's "NHS Reinstatement Bill", and ask them if they do not, why not? You can reach your MP via https://www.writetothem.com/ For further information, please see: https://www.opendemocracy.net/ournhs/caroline-molloy/new-law-proposed-to-stop-nhs-becoming-simply-memory