This article is intended as an introduction to some of the legal decisions which may affect someone with Huntington's Disease and relates to the law in England

HD and the Law

People with  Huntington's Disease and their families have a number of difficult issues to consider when coming to terms with their diagnosis. The predictive test offers people at risk the unique opportunity to plan for the future in which Huntington's Disease may well be a reality and a chance to anticipate future difficulties which arise as a result of the disorder. Huntington's Disease fills people with fear and often they find it easier to shut out what lies ahead and hope that they will cope when the time comes. Sadly this approach often worsens  a situation which is already fraught with difficulty. One area in which people can take control and make decisions in advance is that of the law. Here we will discuss various aspects of the law which we hope will enable you to consider some of the issues involved.

Making A Will
A will is a legal document which indicates the wishes of the deceased regarding the disposal of their assets upon their death. A will determines who should be left items, property and money upon the death of another and the document indicates named executors, age of inheritance, trust arrangements, etc.

If you do not make a will the law will decide who inherits and the law is very specific. The effects of a deceased person pass first to their married spouse, then to their offspring, surviving parents and finally to surviving siblings. If you wish to make alternative arrangements you must make a will. The law is not sympathetic to an individual's informal requests. Do it yourself wills as found in stationery shops are not recommended as often people underestimate the extent of the goods they possess and if your intentions are complicated there may be some debate regarding your wishes in the event of your death. People thinking about a will ought to consult a solicitor. It need not be expensive, a standard will can cost as little as £35 and a couple can make a will together for £70. The more complex your requests the more expensive it becomes. legal aid may be available in some cases and anyone can make a will.

Enduring Power of Attorney
Enduring Power of Attorney is a legal arrangement introduced by legislation in 1985 to safeguard the finances of an individual should they become unable to deal with their finances during life. It enables people to decide in advance who they would like to deal with heir affairs for them. Legally the "donor" is the person who gives power to another, the "attorney" is the person who agrees to assume power of attorney for the donor. Anyone can be a donor providing they are over 18 years old and mentally capable. The attorney is named on a legal form by the donor, or a solicitor acting on behalf of the donor. Attorneys can be anyone chosen by the donor providing they agree to assume this role. The attorney must be over the age of 18 and must not be bankrupt when he or she signs the Enduring Power of Attorney.

The form is available from stationers who provide legal documents or from your solicitor. The donor must consider very carefully what powers he or she wishes to give the attorney. The authority a donor may give the attorney may be:-
 

• A general authority - which authorizes the attorney to carry out any legal transactions on the donors behalf

• A specific authority - which enables the attorney to deal only those aspects which are specified in the power

• A general or specific authority with restrictions and conditions - which authorizes the attorney to deal with all the donors affairs expect specified aspects. For example the power may exclude the attorney the right to sell the house in which the donor resides.

Enduring Power of Attorney covers decisions regarding monetary and financial affairs and can be shared by more than one person as long as this is clearly stated on the documentation relating to the case. Enduring Power of Attorney does not relate to decisions other than financial ones therefore an attorney cannot override an individual's plans regarding long term care or medical decisions. Power of Attorney is relevant when a person has property, money, shares, bank or building society accounts, pensions and any other financial interests. If a person is in receipt of DSS benefits only, an appointee system is available via the DSS and the Power of Attorney is not necessary.

What is an Attorney
An attorney is someone who can act on behalf of a donor in financial matters. If the donor gives general authority to act on his/her behalf in relation to his/her business or financial matters, then the attorney will be able to sign cheques, withdraw money, buy and sell shares or property. The attorney would be authorized to undertake any financial transaction the donor may have undertaken themselves. Restrictions and conditions can be built into the Enduring Power of attorney as already been indicated above.

Choosing an Attorney
The person you ask to act as your attorney should be someone you know well and trust, it does not have to be one individual and could be all or some of your family acting together to assure your best interests. The attorney(s) do not have to live locally, but should be in touch with the donor to ensure they are acting in his/her best interest. In some cases, when there are no family members od friends available, the attorney may be appointed from your solicitor's firm or from your bank. If you decide to appoint a professional as your attorney you will be expected to pay fees for their services.

Power of attorney should be considered in good time in order that both the donor and the attorney understand and agree to the arrangement. Power of attorney should not be thought of as a crisis solution and the donor must be deemed to have capacity to appoint their attorney.

The donor can cancel or revoke the Enduring Power of Attorney at any time whilst he/she remains mentally capable. However the Power cannot be revoked once it has been registered unless the Court of Protection confirms the revocation. (see below).

When do the powers of the Attorney begin
The powers of the Attorney may begin with immediate effect if this is the wish of the donor. Alternatively forms that grant Enduring Power of Attorney can stipulate when the attorney should assume responsibility. Medically there is a capacity test available which can determine when an attorney needs to step in.

Registration of Enduring Power of Attorney
When the attorney believes that the donor is or is becoming mentally incapable they must apply to register the Enduring Power with the Public trustee before they can act under it. To register an Enduring Power of Attorney the attorney must give notice of intention to register in the prescribed form EP1 to the donor and to the donor's next of kin (where the next of kin are acting as attorneys there is no need to formally notify one another). Application must then be made immediately  in the prescribed form EP2 to the Public Trustee along with the original Enduring Power document and a registration fee. The Public Trust Office will hold the papers for a time whilst they check to ensure everything is in order before registering the Enduring Power of Attorney.

Court of Protection
The Court of Protection is an office of the Supreme Court. its function is to manage and administer the property and affairs of individuals in certain circumstances.
 

• when that person is unable to look after their interests themselves.
• when there is no one else available to assume the role as their attorney.
• when an individual is deemed to have lost the capacity to make decisions, mental capacity is determined medically.

Court of protection is a formal arrangement administered centrally via London. It is intrusive, expensive and can be very upsetting for those involved with the individual. There are some cases however when there is no alternative and where court of protection must be used in order to provide a legal framework of support for an individual's affairs.

Living Wills/Advance Directives
An living will/advance directive is a complex legal document which stipulates in advance the medical treatment and/or nursing care an individual would like to receive in specified circumstances. In a advance directive a person may stipulate that in the event of an acute episode, i.e.: pneumonia, they refuse to accept a specific treatment, i.e.: antibiotics. There are some legal difficulties involved as an individual must be very clear about the instructions they give and it is advisable to have discussed plans with loved ones and with the professionals involved in your care beforehand. Advance directives are often misunderstood and many people feel uncomfortable about the issues raised. People who decide to make an advance directive should think very carefully about the implications of their decision, they should discuss it fully with significant people in their lives and with their doctor and ought to seek advice regarding the wording of the document.

Before acting on any of the above individuals are advised to obtain further information specific to their circumstances from a solicitor or Legal Advice Centre.