A helping hand after meningitis

A helping hand after meningitis

Message from Meningitis Now

About this guide

The lives of thousands of people every year are touched by meningitis and meningococcal septicaemia and its the impact can be lifelong. For some, it means the loss of a loved one. For others, it means an uncertain future for them or their loved one as they cope with the impact of the disease over time. Whatever the outcome, Meningitis Now is here for you every step of the way, providing support and information whenever you need it.

The impact of meningitis on you and your family cannot be understated. Whatever the outcome of the disease, there may be broader practical and legal issues that can cause concerns, some of which may not be immediately apparent.

We are grateful to Irwin Mitchell and Enable Law for producing this booklet, so that those dealing with the consequences of meningitis know their rights and options.

We hope that you will find it helpful.

All images are courtesy of Meningitis Now

This guide has been prepared in order to offer some help and advice in some of the common areas that may need to be addressed following meningitis. These have been organised into separate sections as follows: Disability and Educational Rights 4 Education 6 Employment 8 Medical Law and Negligence 10 Inquests 12

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Care and Support

Some people who have had meningitis are left with after-effects that require ongoing specialised treatment and support. For others, after-effects can become evident at a later stage in the recovery process.

Many local authority social services departments offer short-term support aimed at helping people regain their independence after a period of illness. This is called reablement. Reablement could offer help and support allowing you to concentrate on the important things in life, including adapting to your change in circumstances.

Disability and Educational Rights • Community Care Services – Helping you get all the care and support you need to live as independently as possible • Continuing Healthcare – Ensuring you receive the healthcare you need living in the community or returning from hospital • Education – Ensuring that you have access to the education you need • Work

You may need guidance on how to approach social services to obtain the care and support you or your family member need, whether that is in the short or the long term. On some occasions you may require someone to act as an advocate on your behalf in order for you to receive the care that will fully meet your needs.

If you are in need of longer term care or support services, your local social services department or Clinical Commissioning Group (CCG) can be approached to carry out an assessment, and to provide you with a care plan detailing the services they feel would assist you. These support services can be provided directly by social services or the CCG, or they can assist you to access your own care and support funded by an individual budget.

Unfortunately, due to the pressures and constraints on local authorities and the CCGs, more limited care may be provided to those who have significant needs or the care assessment may fail to recognise the extent of your requirements.

However, you can seek to challenge the assessment and the funding granted to ensure that you are provided with the services to which you are entitled.

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Education Education, Health and Care plans now enable children up to the age of 25, who are in education, to receive a complete package of support if they require it.

This may mean seeking help with: • Obtaining a statutory assessment of a child’s educational, health and care needs • Refusals to issue an EHC plan, or challenging the content of an EHC plan • Refusals to reassess a child’s educational, health and care needs • Decisions not to maintain or to cancel a child’s EHC plan • Assistance and representation with EHC plan appeals, including representation at tribunals.

EHC plans are only available in England at this time. For advice for families in Wales, please contact, IPSEA - a registered charity offering free and independent advice to parents of children with special educational needs on: 0800 018 4016.

What are Education, Health and Care plans?

Statements of Special Educational Needs (SEN) for children in schools, and young people in further education and training, have been replaced with a single combined Education, Health and Care plan (EHC plan).

This will extend the current age of eligibility for those with a statement of SEN, and still in education, from 16 to 25. EHC plans must be prepared and maintained by the local authority and include annual reviews and re-assessments.

An EHC plan covers children and young people from birth up to the age of 25 and includes information about health and social care needs, as well as special educational needs in one single document.

One in every five children will have some form of SEN during their school years, but this number is increased for children and young people who have had meningitis.

Everyone should benefit from the right to a good education, regardless of their disability, and should be provided with all the support they need to progress through their education.

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Work When you are recovering from meningitis, have suffered bereavement, or are caring for someone who has been affected by meningitis, it may be difficult to cope with your workload.

You may find that your job becomes too stressful for you to deal with or that you are unable to return to work. Many employers will be very supportive when an employee suffers bereavement or is recovering from meningitis.

However, you, or a family member, may be left with long-term health problems or a disability that impacts on your ability to work.

Employers have a duty to make reasonable adjustments to working practices to accommodate their employees. This means, in practical terms, that: • A person should not be refused employment simply because they are disabled or in circumstances where a non-disabled person would be refused employment • A disabled employee should usually be allowed time off work to attend medical appointments relating to their disability • Employers should usually discount any disability-related absences when awarding benefits which are linked to good attendance records • Employers should also usually discount any disability-related absences when making decisions affecting the employee’s role (e.g. selection for training, promotion or redundancy) • An employee be allowed to take reasonable time off work as a result of the death of a dependant • Employers must also make reasonable adjustments to the workplace to accommodate their employees - these could be changes to workstations, premises or working hours. If these adjustments are not made, then the employer must be able to justify that they would not be reasonable (e.g. because they would not be practicable or be too disruptive).

Where an employee is dismissed because of their disability, the employer must demonstrate that the reason for dismissal could not have been avoided by any reasonable adjustment. An example of this could be where an employee’s main job role involved driving and due to their disability they are no longer permitted or able to drive.

It may be the case that you require help in ensuring that the rights and responsibilities of employers and employees are understood, protected and, where necessary, upheld by litigation. In some circumstances, this may mean seeking help from someone with legal expertise to provide you with the advice and support you need to ensure you are being treated both fairly and legally by your employer.

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Where families are concerned that there has been a delay in the diagnosis of meningitis, they naturally want answers and the comfort that lessons have been learnt and mistakes in the future will be avoided for other families.

Medical Law and Negligence Fortunately medical treatment in the UK is generally of a high standard and poor decision making and medical accidents are rare. Meningitis is a devastating disease and therefore early detection is extremely important. Sadly we see cases where medical professionals have failed to listen to the concerns of patients and their families when reaching a diagnosis. These failures can leave the patients and their families to cope with lifelong disabilities or even the loss of a loved one.

It may be appropriate to bring a formal complaint about the treatment provided. This can be done whether the treatment was provided by a NHS hospital, privately or by your GP. There are specific complaint procedures which you can pursue at www.nhs.uk/NHSEngland/ complaints-and-feedback/Pages/nhscomplaints.aspx Alternatively, a claim for compensation may be justified. To pursue a case for negligence, it must firstly be established that you or your loved one received medical treatment which fell below an acceptable and reasonable standard and secondly, that this negligent care has led to injuries being suffered or someone’s death which could otherwise have been avoided.

It may be that the hospital failed to reach the correct diagnosis or delayed in commencing the necessary antibiotic treatment. Or it could be that your GP failed to pick up the early stages of meningitis and delayed your referral to hospital for treatment, which led to a worsening of your symptoms and potentially permanent injury or death in some cases.

Whatever the circumstances of your treatment, the legal investigation process requires information to be gathered, which will usually involve obtaining medical records and seeking independent evidence from expert medical practitioners.

This is the kind of work which will be undertaken by specialist medical negligence solicitors.

Compensation is not a windfall but rather a way of providing you or your loved one with financial support in relation to, for example, ongoing care and rehabilitation needs and the loss of any employment.

If you or your loved one have ongoing treatment with the hospital or clinicians where the negligence occurred, this should not you from investigating a claim as the hospital and clinicians continue to have a duty of care to provide the best treatment and support.

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Inquests Where meningitis may have resulted in the death of a loved one, an inquest may be held in order to establish how the deceased died. The prospect of an inquest can be very daunting for a bereaved family, but can often provide the answers to many of the questions that are left unanswered following a loved one’s sudden death.

What is an inquest?

An inquest is an independent judicial inquiry carried out by a coroner to establish the following: • The identity of the deceased • The place and time of the death • The cause of death.

An inquest is a fact-finding exercise and is not intended to apportion blame on anybody, including hospitals, GPs or other medical professionals.

Meningitis Now’s Memorial Garden

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Decision Making When Someone Is No Longer Able To Make Decisions In some situations, family members may no longer be able to take care of their own finances, health or welfare, for example, as a result of an acquired brain injury following meningitis. If a loved one has lost the capacity to do this, you may need to seek legal support to ensure their financial affairs are managed by a Deputy through the Court of Protection.

The Court of Protection is the legal body responsible for making decisions about the management of finances and other affairs such as the health and welfare of people who lack the mental capacity to do so themselves.

It may be that you need help or support in relation to the following matters: • You are responsible for managing someone else’s affairs • You are concerned about the ability of someone else to manage their affairs or their loved one’s affairs • You are concerned about your own ability to manage your own affairs • There is a dispute about what social care, residence or medical treatment is in a person’s best interests.

A specialist solicitor dealing with the Court of Protection can advise you on the above matters.

Lasting Power of Attorney A Lasting Power of Attorney is a legal document that allows you to plan what should happen to you, and agree who can make decisions for you, if you become unable to decide for yourself.

By making a Lasting Power of Attorney, you can: - Choose a person to look after your affairs and welfare in the future - Specify your wishes and what powers your attorneys should have - Choose who is told about your Lasting Powers of Attorney - Allow people to raise concerns, if they wish to do so.

Statutory Will A Statutory Will is a Will which can be made on behalf of someone who is no longer capable of doing so themselves. A Statutory Will can be made to ensure that their estate is distributed in line with their wishes.

To make a Statutory Will on behalf of someone else, you need to complete an application form and a statement which is considered by the Court of Protection. A decision is then made as to whether the Will is appropriate.

These types of Wills can be complex and expert legal advice is recommended.

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Contact Meningitis Now We are here to support you following meningitis - whatever the outcome.

Please contact us on: Helpline 0808 80 10 388 helpline@meningitisnow.org www.meningitisnow.org

For help or legal assistance with any matter raised in this booklet, please contact: 08000 23 22 33 www.irwinmitchell.com 0800 044 8488 www.enablelaw.com

This information relates to the law and procedures in England and Wales.

All information included within this booklet is correct at time of print: February 2018.

Registered charity number (England & Wales) 803016 (Scotland) SCO37790.

Company registration number 2469130.