Disability

18 Jan

Disability

 

I’ve looked at the World Health Organisation statistics on disability and whilst they are global, it is relevant to us here in the UK, so here goes:

 

There are over a billion people living with disability, that’s 15% of the global population.

 

Disability disproportionally affects vulnerable populations, such as women, children, the elderly and adults who are poor.

 

People with disabilities often do not receive needed healthcare! Whilst this might be more relevant to the global population, here in the UK, disabled people are still badly treated, which is demonstrated through various whistleblowing scandals and as we have NICE guidelines, which effectively rations healthcare, disabled people might not get all the treatment they need.

 

Children with disabilities are less likely to attend school than non-disabled children.  In the UK, school is compulsory and non disabled children tend to be taught to their ability and can be put in “streams” or have access to grammar school.  Disabled children can attend mainstream school, but can be more at risk of bullying.  When disabled children attend special needs schools, there are higher staff ratios, these schools are for more profoundly disabled children and teaching to their ability can be difficult, when it is hard to work out what their ability is.  So this global statistic has relevance in the UK.

 

People with disabilities are more likely than non disabled people to be unemployed.  In England & Wales, we have the Equality Act 2010, which incorporated the Disability Discrimination Act 1995, which gives disabled people the legal right to expect “reasonable adjustments” to be made for them, but the recent post legislative scrutiny of the Equality Act by the House of Lords indicated that there is still a lot of work to be done.

 

People with disabilities are vulnerable to poverty.  This links with the statistic above, if a person cannot get work, it is harder to lift themselves out of poverty.  They might start a business, but without ever having experienced work, it can be more difficult to make the connections for a successful business.

 

Rehabilitation helps maximise function and support independence.  With the NHS, we are fortunate in the UK to have access to rehabilitation.

 

People with disabilities can live and participate in the community.  Normalising “difference” is really important to the experience of people living in the community and the Dementia Friends social awareness movement is a good example of normalising disability.  The knock on effect of empathy to one condition, is it often leads to acceptance of other “differences”.

 

Disability barriers can be overcome.  All new building projects should be designed with good access in mind, which not only includes things like ramps for people with physical health impairments, but with a view to other disabilities, including hidden disabilities.

 

The Convention of Rights of Persons with Disabilities promotes, protects and ensures the human rights of all people with disabilities.  This is a concept about which I am passionate, people are people first, they are not just their disability, there is always more to them than that and if/when they are seen as people with dealing with the burden of their disability, the compassion to made adjustments or support them can progress.

 

#EveryLifeHasEqualValue

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Withdrawal of Life Sustaining Treatment

4 Jan

 

Withdrawal of Life Sustaining Treatment

 

There have been a couple of cases coming to Court recently regarding the withdrawal of life sustaining treatment.  Court cases are always stressful and can be very expensive, so in recent cases, the question has been asked as to whether it is necessary to go to Court in every case.  These kinds of cases arise where there is no attorney under a Lasting Power of Attorney, appointed to make decisions about life sustaining treatment.

 

There is practise direction (legal guidance for the Court process), that indicates that it should, however this practise direction is being withdrawn in December and not replaced, which effectively means it’s being deleted!

 

The Court considered lots of things and made it clear that every decision to withdraw life sustaining treatment is always unique and case specific.  They also said that every person is entitled to the rights under the European Human Rights Convention and in particular they are entitled to Article 2 (right to life) and Article 6 (right to a fair trial).

 

One of the first cases of its kind was the case of Anthony Bland, who survived the Hillsborough disaster, but in a permanently vegetative state.  The NHS Trust caring for him applied to the Court for permission to withdraw life sustaining treatment in 1993, the order was granted, as it was decided in the circumstances it was in his best interests to do so.  At that time, the Court’s view was that all such cases should be considered by the Court.  As time has gone on and medical advances have improved, there are more very poorly people being kept artificially alive with the use of medicine and in particular artificial nutrition and hydration.

 

So what has the Court decided?

 

It is still an individual decision relevant to the circumstances of each case.  However the Court has also decided that it is not always necessary to apply to the Court for a decision to withdraw life sustaining treatment where all parties are in agreement, including the family and all clinical team treating the patient.  They must be sure that there is no prospect of recovery and that it is in their best interests to withdraw the treatment.  They should also attempt to find out what their wishes would have been, had they been able to express them.  There should also be no doubts or concerns about the decision, otherwise, the case should be brought to Court.

 

So what does this mean?

 

That life sustaining treatment might be withdrawn without having to go to Court, as long as there are no concerns about the decision and everyone is in agreement.  However these recent cases are not guarantees that the matter will not be brought to Court, just that it might not be!

 

The other key point is that it is best practise, a lot easier and less stressful to grant a Lasting Power of Attorney for Health and Welfare, appointing someone you trust, who would be able to make this decision on your behalf.  One of the cases was for a 52 year old man, who had a cardiac arrest, it was not possible to resuscitate him for 10 minutes, leading to permanent brain damage and he would need care for the rest of his life.  As long as your proposed attorneys are over the age of 18, there is no time when it is too early to do this, then they can be stored until or if they are every needed.

 

If you need help or advice regarding LPAs, please contact me.

Sectioning – Mental Health Act 1983

7 Dec

 

Sectioning – Mental Health Act 1983

 

This legislation is about the safety of the person involved and their immediate surroundings, including the people in those surroundings.

 

People can be sectioned under s.2 of the MHA if they are suffering from a mental disorder and are at serious risk to themselves or others and that the situation warrants detention in a hospital for assessment and possibly treatment.  This means that two medical professionals will have considered the situation and thought that keeping this person in a specialist mental health unit will be the best thing for them in the circumstances.

 

The “mental disorder”, could just be temporary, I have previously had a client who was going through a stressful divorce and at that time was having difficulty getting contact with their child, the pressure of which became too much and they attempted to take their own life.  They were detained for a few weeks and as time passed and once the divorce was resolved and family relations settled, they became much happier and were unlikely to take that actions again.

 

The mental disorder can also be cyclical, I have had a different client who is schizophrenic, they heard voices in their head.  At times they can live with support in the community, even though they feel compelled to follow what the voices have said, they are not necessarily causing serious harm to themselves or others.  That status is not always sustainable and from time to time, something will trigger an episode where the stability of the preceding months is broken and they are at risk, often to themselves, but can also be to others.

 

The elderly with dementia can be detained if their behaviour becomes aggressive towards others or damaging to themselves, such are refusing to eat.  Aggressive outbursts tends to be more common than issues to do with self-harming, however in the process of being aggressive towards others, these usually very frail elderly people can get hurt themselves.

 

The period that they can be detained for under s.2 is not more than 28 days, so if the healthcare professionals looking after them still think that they need to stay in the specialist mental health unit, then they can either informally detain them, if they think that they would be willing to stay, or section them under s.3.  The requirements for this are similar to s.2, in that the person needs to be suffering from a mental disorder, but that they need more than assessment, that they need treatment and that it is necessary for their protection or the protection of others that they receive treatment.  Again, this must be supported by two medical practitioners.  It is also relevant that this measure in proportionate, that other forms of treatment have been considered not to be appropriate.

 

Health care professionals consider carefully whether they will section someone under s.3, as there is funding for care afterwards, which can become very expensive!  The aftercare funding that follows will be in place as long as the person requires “aftercare”.  So if the condition that they suffer from is completely resolved, then the funding might cease.  Often for people with dementia, as the dementia is both deteriorating and non-curable, the funding remains in place for life.

 

When people are detained under either s.2 or s.3, the healthcare professionals caring for them might consider that an acute hospital is not the best place for them to remain and can discharge them from the hospital to be admitted into a specialist care home, as this might be a calmer and or more homely environment.  This can be done under s.17 of the MHA, whilst they still remain sectioned under either s.2 or s.3 and would continue to be supervised by clinicians.

 

If you have need any help or support dealing with a loved one, who has been sectioned, please contact me.

Best Interests Meetings

23 Nov

 

Best Interests Meeting

 

These meetings take place when someone is receiving treatment and there needs to be a discussion about how they will be cared for in the future, when they are cognitively impaired and cannot make that decision for themselves and there is no attorney who directs what happens, as the person has not created Lasting Powers of Attorney.  They can either be a multi-disciplinary discussion as the case in complex and it is easier to decide what should happen going forward when everyone is in one room and there can be a full and frank conversation about that person’s various and complex needs.  Additionally and alternatively they can take place where there is a dispute about how someone should be cared for, particularly if that dispute is with the family.

 

These meetings are aimed at being constructive rather than too formal, but where there is a minute taker and a room full of health professionals from various disciplines, they are very intimidating.

 

Families know their loved one well, they know what they would want and have a good idea about how they will react to certain situations, however they are usually not healthcare professionals and can struggle to feel that they have been heard.  These meetings take place around a highly stressful situation, when a loved one is unwell, that’s enough stress to deal with on its own, then adding what is perceived to be an intimidating meeting can often be too much to be able to sit rationally and articulately and be understood.

 

The purpose of the meeting is to make a decision in that person’s best interests.  In accordance with the House of Lords post legislative scrutiny of the Mental Capacity Act 2005, which was published in 2014, the Lords said that in general health professionals are paternalistic and social services are risk averse.  This makes it hard for families to assert that their loved one would prefer an outcome that involved more risk that the health care professionals are comfortable with.

 

I have supported many families in these kinds of meetings, to ensure that they feel that they have been heard and are supported so that they don’t feel quite so alone and do not understand the process that they are involved in.  If you need any help with this, please contact me.

Dealing with the immediate issues after a loved one has died

9 Nov

Dealing with the immediate issues after a loved one has died

 

The first thing to say about this is that everyone grieves in a different way.  If the person who has died was a family member or some other person you were close to, or supposed to be close to, how each person deals with the emotions of that will be different and some very surprising.  Not every parent loves their child and not every child loves their parent, so on their death, there is a social “norm”, that the survivor will be sad and bereaved, which might or might not be the case, they might be relieved!  Remember there are no rules about grieving, you need to do it when you are ready and in a way that works for you!

 

So having managed to cope with the immediate few minutes and hours after someone has died, ensuring that the medical professionals are called in to certify the death and the funeral director is called to collect the body, the next few days seem to be a flurry of activity at a time when the survivors might well be feeling numb.  They feel like they are going through the motions and it can be almost like an “out of body” experience, if the stress of the situation is that challenging.

 

The first thing to do is register the death and this cannot be done until you receive the appropriate medical forms from the GP or whoever is certifying the death.  If there is going to be a cremation, this certification process requires signature by two separate doctors, to ensure that there was nothing suspicious about the death.  With that you can go ahead and arrange the funeral and book the cremation (or burial).

 

The funeral director is a professional, they deal with bereaved people every day and are usually very understanding.  It is their job to try to get the funeral that you and your loved one want, so they will patiently talk you through what to do next.

 

As well as arranging the funeral, you might also arrange a wake, a party to celebrate the life of the person who has just past.  This is an opportunity for all those who knew that person to get together and talk about their memories of that person and what they will miss about them.  They are a mixture of joy and sadness and can be restrained or raucous!

 

It is after those things have been resolved that you can turn your attention to the estate, which I have heard referred to as a “legal nightmare”!  Depending on the size and complexity of the estate, it can be daunting and others can be far more simple.  If help is needed, Nash & Co have a team that can assist.

Dying and Bereavement

26 Oct

 

Dying and bereavement

 

When a family member is terminally ill, everyone deals with that information in different ways, that includes the person themselves.  The Kubler-Ross model has 5 stages: Denial, Anger, Bargaining, Depression and finally Acceptance.  These stages can work for all parties involved.

 

Family members can therefore choose to be very involved or not at all and this difference of grieving process has an impact on family relations, at an already difficult time.

 

Some people are afraid of dying and don’t want to do it alone, they will hang onto life for as long as they can.  Others accept it and at the end willingly go there, rather than cling to life.  Some terminally ill people don’t want their family to witness their death, they consider it personal.  So for family’s who are on a 24 hour vigil, the 5 minutes in which they leave the bedside to have a comfort break will be the 5 minutes that person chooses to pass away.  Others want their family there, will white knuckle the hands of a loved one, rather than let go and feel alone.  Either situation has its emotional impact on all parties.

 

Some family members will communicate with the others that turn up and let them know that if there is anything they can do to help, they will, yet when asked, are always busy with something more important.  They just can’t deal with facing the situation.

 

Some family members want to be involved with everything, do as much as they can, which might be more than is required and might be an invasion of the privacy of the dying person.

 

So what is the answer?  There is no “one” answer and there is no “right” answer.  Everyone deals with death and grief in their own way.  It is important to remember that, however anyone else deals with it, they might not understand how you do and vice versa.  So just give everyone a bit of slack.

 

When in doubt, imagine yourself in a week, a year and a decade and do the thing that means that you won’t have regrets, whatever that is.  And whatever you choose, know that you are not the only person in the world that has felt that, grief is universal, even if you feel alone in the moment.

Pain – managing it for someone else

5 Oct

 

Pain – managing it for someone else.

 

See a loved one in pain, especially if they are having difficulty explaining their pain is really hard to watch.  You can look at their broken body and be sure that they are in pain – they just must be – you only have to think about their injuries!  But pain can be a personal thing, some people are far more stoic than others.

 

So if your loved one cannot explain in words their pain, how do you know?  Do they flinch or grimace?  Are there any changes?  Does something affect their response?  Do they shift their position?  And what can be done to help them?

 

Firstly, contact their doctor to discuss pain medication.  How pain is usually clinically managed, which is to prevent over sedation is to climb up a “pain ladder”, so pain relief is estimated and then generally started at a low level.  Pain relief can also be given regularly or on an “as required” basis for “breakthrough” pain.  So you can have constant pain relief or just when it gets really bad or a combination of both.

 

So having been given pain relief for a few days, to see how they get on, the loved one should be under constant monitoring to find out if this level of pain relief is enough.  So are they still grimacing?  Do they display shifting movement?  Do they look like they are unhappy or hot or cold?  Even when very sleepy and non-communicative, people tend to shift their bodies about rather than lying in a relaxed manner.  And again, if it is safe to lightly touch them somewhere, see how they respond to being touched, they might appreciate the comfort of human touch and you can then feel through your hand any flinching or shift in their body as well as visually observing it.

 

If they are still in pain, then generally pain relief is increased about 20% per rung of the “ladder” and as the pain relief goes up, the person can become more sedated.  The end stage of some diseases are very painful and so pain relief increases and they become more sedated, eating and drinking less, until their body finally shuts down potentially from both the underlying disease and / or lack of hydration and nutrition.  As pain relief increases there is a really careful balance when the person is really poorly, as too much pain relief or too big an increase can trip over the line of providing comfort into assisted dying.  Assisted dying in the UK is illegal, as it is in many other countries and the healthcare professionals are very cautious in this area of care to stay within the bounds of legality.

 

This balance at the end of life is really important, if someone is dying a painful death, then they should be provided relief from that pain and sadly the pain relief can make them more sleepy and in truth, this could to bring about their death more quickly than without it, but no-one should die in agonising pain!  What the professionals cannot do is actively take steps to expedite death, just make it more comfortable.

 

And for the carers watching it, it is an awful experience.  Just awful!