Skip to main content Skip to navigation

MS Trust Blog Home

Archive for the ‘Action for MS’ Category

« Older Entries

Have your say: urgent and emergency care review in England

19th June 2013 by alice.hamilton

NHS England has opened a consultation on plans to improve urgent and emergency care services provided in England. They are working towards a framework of a better care system for when you need urgent care.

Since many people with MS will need urgent care at some stage with their condition, this may be very relevant.

Urgent care is seen as:

  • Self care and self management
  • Telephone care eg NHS 111
  • Face to face care eg emergency GP appointments, NHS walk in centres, NHS urgent care centres

Emergency care is seen as:

  • 999 emergency services
  • A&E departments
  • Emergency admissions to hospital

The review has garnered together a collection of evidence  and a set of emerging principles with possible options for implementing these principles . There is a standard consultation form for comment which contains 20 questions, most of which are multiple choice so should not be too onerous to complete.

Please have your say if you have had good or bad experiences of the urgent and emergency care system and feel that it is ripe for an overhaul.

The consultation closes on 11 August 2013.

Tags: , ,
Posted in Action for MS | 1 Comment »

Cavendish review of Care and Healthcare assistants – what we said

22nd May 2013 by alice.hamilton

Healthcare and care assistants can be the most important people in providing basic care at home or in hospital, such as help with eating, drinking, toileting, washing and dressing.

The government launched a review, headed up by Camilla Cavendish, into how healthcare and care assistants should be trained, and whether they should be formally regulated, the way that doctors and nurses are. You can read what we said here:

No date has been set for the Review to publish findings.

Tags:
Posted in Action for MS | Comment »

NICE or a nasty tangle? Four potential new drugs, NICE, licensing, and ‘best supportive care’

27th March 2013 by alice.hamilton

Four new disease modifying drugs for relapsing/remitting MS are currently going through appraisal at NICE.

These are:

These drugs offer some really exciting prospects, particularly as BG-12, teriflunomide and laquinimod are all tablets, by contrast with the current generation of injected disease modifying drug therapies. Consequently they are eagerly awaited by many people with MS, and by the neurologists who will prescribe them.

NICE has a chequered history with these drugs. They were due to be assessed in one multi-technology appraisal. Now NICE has chosen to appraise each treatment individually. The advantage of the single technology appraisal process should be that each drug may be available on the NHS sooner than if they were all appraised simultaneously. The risk of appraising each drug individually is that the bigger picture of managing MS is lost, or that drugs are treated inequitably because of different appraisal decisions.

Before any drug can be prescribed, it has to be licensed by the EMA (European licensing agency). The EMA scrutinizes clinical and lab data, and if satisfied that the new medicine is effective and safe, a licence is issued.  The licence may place restrictions on the use of the drug, such as limiting it to a particular group of people or requiring extra monitoring for side effects.

Teriflunomide and BG-12 have just passed the initial licensing stages with the EMA for use in MS. Laquinimod and alemtuzumab are yet to be licensed.  Assuming licences are granted, NICE’s role is to judge whether or not the NHS should pay for them. The NHS is then legally obliged to provide approved medicines to anyone considered eligible.

However, if there is any delay in licensing one of these drugs, their availability on the NHS via NICE will also be slowed.

NICE has begun work on the appraisals so that decisions can be made as quickly as possible after licensing.  Notoriously slow, their anticipated guidance publication dates are as follows:

Therefore, the earliest anyone with MS might be prescribed one of these is spring next year. Bear in mind that the Scottish Medicines Consortium in Scotland will undertake their own economic assessment, while in Northern Ireland the Department for Health, Social Services and Public Safety in Northern Ireland will review NICE guidance and make their own decision; Wales normally follows NICE.

The MS Trust is fighting hard to ensure that these drugs are appraised fairly by NICE. One of our biggest concerns was that the initial draft appraisals NICE produced compared the costs of these drugs treatments with ‘best supportive care’ or ‘standard care’.

What do these terms mean? NICE doesn’t define them. Our best guess is that this describes a regime of no treatment on disease modifying drug therapy for people who are regularly relapsing. The consequence of ‘best supportive care’ is that it makes the cost of any drug treatment very hard to justify.

However, this issue has arisen before, for example in appraisals of fingolimod and natalizumab. At the time, a survey of neurologists suggested that ‘best supportive care’ is not used in routine treatment, so it is not a viable comparison.

The MS Trust was so incensed by ‘best supportive care’ (.doc) coming up again that we issued a joint statement to NICE, in conjunction with the MS Society and the UKMSSNA. We were delighted to see that every respondent to the initial draft appraisal scope complained about the comparator of ‘best supportive care’, with the result that it has been removed from the second stage of the appraisal process.

NICE is a closed shop when it comes to consultations: they only accept submissions from registered stakeholders – in practice, patient organisations and professional bodies. Please get in touch if you want to have a say in how NICE appraises these drugs, and we will endeavour to ensure that your views are represented in our future submissions.

Alice Hamilton: alice.hamilton@mstrust.org.uk

Tags: , , , , , , , , , , , , ,
Posted in Action for MS | Comment »

Concerned about how to complain within the NHS? Have your say

25th March 2013 by alice.hamilton

A new review of how complaints in the NHS are handled in England is underway, and is due to report in July. The review is actively seeking comments from individuals about their experiences of complaining about the care that they have received. The review will look at how complaints are handled, but also about whether the information submitted in complaints ever translates into improvements in care.

The review’s remit is to:

  • consider how to align more closely the handling of concerns and complaints about patient care
  • identify where good practice exists, how it is shared, and why it may or may not be adopted
  • consider whether and what standards to apply to handling complaints
  • consider how information garnered from complaints can improve services
  • how any such information might best be shared with patients and with commissioners
  • consider how to ensure hospital Boards and senior managers take individual concerns and complaints seriously, and act on them
  • identify the skills and behaviours that all staff, including health professionals but also managers, receptionists and auxiliary staff, need to ensure that the concerns of individuals are at the heart of their work
  • consider better means of supporting complainants, eg through advice, mediation and advocacy
    include the handling of concerns raised by staff, including supporting whistleblowers

It will be encouraged to make recommendations about:

  • any aspect of the NHS complaints arrangements and other means by which patients make concerns known (eg Patient Advice and Liaison Services)
  • the way that organisations receive and act on concerns and complaints
  • how Boards and managers carry out their functions
  • the process by which individual organisations are held to account for the way that they handle concerns and complaints

Please make your views known, either by email: ComplaintsReview@dh.gsi.gov.uk or write to

Review of NHS Complaints Handling
Department of Health
Room 5E43, Quarry House
Quarry Hill
Leeds
LS2 7UE

Tags: , ,
Posted in Action for MS | Comment »

Have your say on future training of healthcare assistants and care assistants

18th March 2013 by alice.hamilton

The Department of Health has set up the Cavendish Review to see what they can do to ensure everyone using services is treated with care and compassion by healthcare and care assistants working in the NHS or in social care (residential care and care at home).

The Review will also make recommendations about how these staff should recruited, trained, managed, developed and helped to do their job.

The Review has a number of questions that they want people with MS or other experiences of hospital and social care to comment on:

Recruitment and training

  • how can recruitment be strengthened to place the right people, with the right values, in the right setting?
  • what further action is needed to raise training standards?
  • how do we ensure that the people get the right training, development and feedback to provide compassionate and competent care in busy working environments?
  • how do we ensure there is consistency in training standards which provide transferable competences and qualifications?
  • what ladder can be put in place to enable people to progress to their potential, including senior health/care assistant roles and, where people wish to, enabling them to become registered professionals (eg nurses, therapists)?

Leadership, management and supervision:

  • on the job, do staff have role models with the right values?
  • what kind of management and supervision do the best settings exemplify?

Engagement and Support:

  • what support do staff need to fulfil roles which can be emotionally draining, including ensuring that their work is properly valued?

Public confidence and assurance:

  • what changes would make people using services, families and carers feel more confident in the service, with greater clarity on the roles staff have and their levels of training?
  • what information would support greater public accountability for employers as to their investment in ensuring a suitably trained and qualified, well supported workforce?

Camilla Cavendish, undertaking the review, hopes to report at the end of May. While no official date has been set for submitting comments, it is probably best to get them in by the end of April.

All comments should be emailed to: careassistant@dh.gsi.gov.uk

Tags: , , ,
Posted in Action for MS | Comment »

Have your say on direct payments for healthcare

14th March 2013 by alice.hamilton

From April 2014, the Government in England wants to extend Personal Health Budgets to anyone who receives NHS Continuing Care and would like to have one.

To do this, they need to change the regulations that define how Personal Health Budgets work. At the same time, they intend to clarify some of the rules:

  • To define more clearly what services must not be paid for with a direct payment (such as most hospital care, and prescription charges)
  • Explain what types of information, advice and support the NHS can give people with a direct payment
  • To relax the rules that people have to set up a separate bank account to receive a direct payment for healthcare if they are only receiving a one-off payment

It’s all fairly technical but if you or someone you care for receives NHS Continuing Care, then this consultation is relevant. All the indications are that the government wants to roll out Personal Health Budgets as fast as possible, so getting it right at this stage is vital.

There are ten questions in the consultation, which runs until 26 April 2013

The MS Trust will be commenting and we will let you know what we say.

Tags: , , , , ,
Posted in Action for MS | Comment »

Prescription charges set to rise again

7th March 2013 by alice.hamilton

Pharmacy signNHS prescriptions are free in Scotland, Wales and Northern Ireland.

NHS prescriptions have to be paid for in England. From 1 April 2013, the charge is rising to £7.85 per item. Pre-payment certificate prices remain the same: £29.10 for a three-month certificate, or £104 for an annual certificate.

If you are prescribed four or more treatments every three months, then the three-month certificate of £29.10 starts to save you money.

Fourteen or more prescriptions per year mean the annual certificate of £104 makes financial sense. You can pay for these monthly by direct debit to spread the cost.

More information about the process can be found in our A to Z of MS – Prescription charges

Tags: , ,
Posted in Action for MS | Comment »

If you like our blog posts, you can now Flattr them!

21st February 2013 by laura.percival

You may have noticed that at the bottom of our blog posts, a new ‘Flattr’ button has appeared. It’s a new way of making micro donations to the creators of web content that you value.

Flattr was launched in 2010 by Peter Sunde and Linus Olsson as a way to reward organisations and invividuals who share good ideas and information over the web. They wanted to create a simple and quick way of donating small amounts of money to lots of different things. Flattr is a Swedish platform and operates in euros, but you can pay into your account using most major cards and other payment providers such as PayPal.

When you’re registered to Flattr, you pick how much you’d like to spend per month (minimum 2 euros). You pay your chosen monthly fee into your account, then whenever you see a Flattr button on a website that you like, click it. Flattr will then count up all your clicks at the end of each month and distribute your monthly spend between everything you’ve clicked on.

For example, if you chose to spend €10 a month and you clicked four Flattr buttons within the month, each of the things you Flattred would receive €2.50. If you clicked 100 Flattr buttons, then they would receive 10 cents each. No matter how many things you Flattr, the amount you pay each month will remain the same.

As the MS Trust is a charity, Flattr will not charge any fees on donations made to us. The money we raise through Flattr will help us continue to provide free and useful information online for everyone affected by MS.

If you are using Flattr already, please don’t forget to click on our Flattr button whenever we blog about something you find interesting. If you would like to find out more about Flattr and sign up for a free account, please visit the Flattr website.

by Laura Percival, Fundraising Officer

Tags: , , , , , , ,
Posted in Action for MS, Government Policy, Support Us, Uncategorized | 2 Comments »

Social care cap: better news?

13th February 2013 by alice.hamilton

Jeremy Hunt, the health secretary in England, has announced changes to the amount that people will have to pay for social care funding.

In England, the new cap is £75,000 for any one person to pay for social care in their whole life. The threshold of assets that mean someone has to pay for all their care has been raised from £23,250 to £123,000; this includes the value of any property such as a house. So anyone who owns a property worth less than £123,000 may still be entitled to some of their care being provided free of charge by the council. A sliding-scale of charges will apply depending on the level of assets held up to £123,000

It’s worth bearing in mind that the £75,000 cap is only for the cost of personal social care. Costs of food, rent, utilities, and everyday life such as clothes, books, social outings and so on, are not included in this cap. The cap applies to social services provided at the normal council cost, i.e. the amount that the local authority is willing to pay. If someone wants to pay for additional or better services, such as a more luxurious residential home, or care that deals properly with issues arising from MS, these extra costs will not be included in the cap.

The £75,000 cap will only come into force in 2017, so there are still four years ahead of paying for services uncapped.

Personal care is free at the point of delivery in Scotland, but providing this is very expensive and Audit Scotland has suggested that the policy may have to be scrapped in the near future. Personal care is means-tested in Wales and Northern Ireland; the Welsh government is busy looking at options for paying for personal care, given this new change of policy in England.

However, the biggest issue is that social care is very difficult to get except for people with severe needs. Unless more money is provided to local authorities to address this, many people with MS will continue to lose out from the system and to have to struggle on with limited independence. We require recognition from Government that people with mild to moderate care needs should be able to access the care they need.

Alice Hamilton
13 February 2013

Posted in Action for MS | Comment »

The revised NHS Constitution: what we suggested

29th January 2013 by alice.hamilton

Part of the MS Trust’s role and a fair amount of our less visible work is taken up in responding to Government policies. Generally any major policy shift or new publication is opened for consultation, and, where it seems appropriate and we have enough staff to do so, we reply. A lot of these consultations are dry as dust, and it’s difficult to get interested in what happens on the page. Yet the implications can be wide ranging.

Recently, there’s been a big to-do about the revised NHS Constitution. This is the updated version of the Patient’s Charter which first came out several years ago. Whereas the current version sought to establish a contract with the general public, in which individuals would take responsibility for their own health, the new version puts more emphasis on patients’ rights, which can only be a good thing, and makes a variety of other minor changes.

Probably the biggest two changes are:

  • duty of candour’ for health professionals, to admit when care has been poor or when things have gone wrong
  • implied consent’ – this is the assumption that one person’s healthcare records can be shared between health professionals without the individuals’ agreement, unless they specifically request that they are not. This has been inserted to make way for the latest attempt at electronic patient records, and should ease the system so that, for example, GPs can see hospital notes and vice versa

While it is only a draft, it’s unlikely that the new NHS Constitution will change significantly after consultation closes.  Read it first, and then you can see what we said here.

Alice Hamilton
28 January 2013

Posted in Action for MS | Comment »

« Older Entries