Issue number 65

Autumn 2015

Inside: Your fantastic fundraising

Contents

Care

For the families of people living with a

Research

diagnosis of PSP or CBD, changes in their loved ones’behaviour or personality can be puzzling and frustrating.
Find out how you can make a gift to research through our PSP Research Network.

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Care

Planning ahead for your care and treatment can empower you to make informed decisions in your own time.

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• Awareness
• Your Stories

PSPA mascot, Hope the Bear, has had a busy time this summer raising awareness.
Jordan Swankie,

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from Arbroath, describes her rollercoaster ride since her dad became unwell.

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Fundraising

When it comes to doing your‘bit’to raise funds, take on whatever challenge you fancy.

Cover: Cheryl Williams and her friends and family conquered Pen y Fan.
The views expressed in PSP Matters, published four times a year, are not necessarily those of PSP Association and therefore products and services advertised or promoted should not be taken as recommendations by the Association, who cannot be held responsible should any complaint arise.
See page 28.

The PSP Association

The PSP Association is a registered charity offering support and information to people living with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), while funding research into treatments and ultimately a cure for these conditions. We rely entirely on donations to fund our work. As PSP and CBD are very similar, we often use‘PSP’as a shorthand for both.

PSP Matters is available as a pdf and can be downloaded from our website. PSP Association Registered Charity Numbers: England and Wales 1037087/ Scotland SC041199 Design by Skelton Design and printed by Newnorth Print Ltd, Bedford

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Welcome…

What a busy summer of fundraising! The innovative ways you find to raise money never cease to amaze me.

The PSP Association

Sadly we can’t recognise everyone’s activities in this magazine, so a big thank you to all those who raise money for PSPA, however you choose to do it.

PSP House, 167 Watling Street West, Towcester, Northants NN12 6BX Telephone: 01327 322410 Fax: 01327 322412 Email: [email protected]

As you know we rely entirely on voluntary donations. This means it is only thanks to your efforts that we can provide support and information to families affected PSP and CBD today, while funding research to find a cure for the future.

Local Groups:

Wendy Crofts, Volunteering Telephone: 01327 356134 Email: [email protected]

This includes our Research Network, which is making great strides in PSP research across the UK. Our feature on page 16 explains how you can get involved with this ground-breaking project.

Fundraising:

Jean Kelly, Fundraising and Events Telephone: 01327 356131 Email: [email protected]

HealthUnlocked

Inside we acknowledge the achievements of our growing band of volunteers, who give so generously of their time and energy to make a difference in their local areas.

This online community provides a safe place where those affected by PSP and CBD can connect with others to share their experiences. https://healthunlocked.com/psp

Finally, as the nights start drawing in thoughts turn to the festive season. We’ve enclosed our Christmas Catalogue, it’s packed with card and gift ideas so please make a purchase if you can, proceeds from sales make a valuable contribution to our activities.

Helpline

The PSP Association Helpline and Information Service offers confidential information, practical and emotional support to people affected by PSP and CBD.

Thank you for your continued support.

Mon to Fri: 9am–5pm and 7pm–9pm

Telephone: 0300 0110 122 Email: [email protected]

www.pspassociation.org.uk

www.facebook.com/ pspassociation

Fergus Logan, Chief Executive

@pspassociation

W o r k I n g f o r a W o r l d f r e e o f P S P

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News

Health minister attends Scottish Parliament event

The Cabinet Secretary for Health, Wellbeing and Sport, Shona Robison MSP, addressed guests at our Scottish Parliament event to raise the profile of PSP and CBD.

HE joined more than 80 people affected by PSP, their families and

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carers, volunteers and supporters at Holyrood on Wednesday, 17 June. The event was hosted by Bob Doris SNP MSP for Glasgow and deputy Convener of the Health and Sport Committee, following a social media campaign by Keith Swankie, who lives with PSP. People living with PSP and those who care for them told the 10 MSPs who attended about the impact of the disease, the issues that affect them and how services could be improved. Ms Robison praised Keith for being a‘fantastic campaigner on behalf of people with PSP’and explained how he had caught her attention through his persistence on social media site, Twitter.

Keith Swankie, front, with, from left, Bob Doris MSP; Sheelagh Swankie; Jordan Swankie; Fergus Logan PSPA CE; Shona Robison MSP

“We need a more responsive and more joined up service for those in Keith’s position. We have to recognise that the changes which matter most and make the biggest difference to people’s lives are not only in the power of researchers and clinicians. It’s also important that a person living with a condition such as PSP is able to decide what support they need and to have some control over how and when it’s delivered.” treatment,”he said. “Keith’s work came to my attention during this year’s PSP Awareness Week and I wanted to learn more about PSP and what can be done to help sufferers. Hopefully the event I arranged at Holyrood will help achieve this.” Keith’s daughter, Jordan and wife Sheelagh gave moving speeches about how family life has changed since Keith’s diagnosis in 2012.

“as a government we absolutely share PSPa’s aim that everyone with PSP should be able to access the care and support they need.”

“As a government we absolutely share PSPA’s aim that everyone with PSP should be able to access the care and support they need,”she said. “It is a devastating condition and we’re committed to supporting people living with the illness, but also their families and carers. We want to ensure that everyone who requires care has access to the highest standards of care in every setting.
Ms Robison also spoke about the need for early and accurate diagnosis. Bob Doris MSP told guests it was‘a privilege’to host the event.
“I commend Keith and others for their dedication in championing both awareness of PSP, as well as research and

As a direct result of the Scottish Parliament event we had a very positive discussion with Dr Alan McNair, Senior Research Manager at the Scottish Chief Scientist’s office, about the opportunity to secure joint funding for a research fellowship in Scotland. More news to follow.

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Getting together in Cardiff

More than 40 professionals supporting people with PSP and CBD attended our free study morning in Cardiff in June.

Verna Gill with DJ Mikey Dee

ELEGATES included nurses, occupational therapists, speech and language therapists, care was followed by an informal Family and Friends afternoon, where those affected by PSP met with others. All PSPA’s events are listed at www.pspassociation.org.uk/events/

PSP on the radio

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We raised awareness of PSP across the airwaves in June. home workers and Parkinson’s nurses. The study morning for professionals
Our Communications Manager, Paula

McGrath, was interviewed by weekly health radio series Word on Health. The special report on PSP was broadcast to 6.5 million listeners on 81 independent radio stations across the UK and the Gulf States. You can listen to the report online here at www.wordonhealth. com/on-air-articles.php Supporter Verna Gill was interviewed by DJ Mikey Dee on Coventry-based Arawak Community Radio Station. Verna described her family’s experience of PSP since her dad Bob Burke was diagnosed in 2011 and talked about her activities raising funds and awareness in her local community.

Delegates at our Cardiff study morning

Free study days for health professionals

EALTH professionals supporting the conditions.”

Join us in Bristol

• families affected by PSP and
• The theme for the days is Improving

Quality of Life and each session will be aimed at the multidisciplinary team, highlighting best practice. Bookings are now being taken for our events in:

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• CBD are invited to our October
• A warm welcome awaits those living with

PSP and CBD, their families, carers and friends at our next Family and Friends Day. The event will be held on Saturday,
14 November at the Holiday Inn, Hambrook, Bristol. Our Family and Friends Days offer the opportunity to learn more about PSP and CBD and the work of the Association, while meeting others affected by the diseases. study days in Manchester and Glasgow. The events are free and open to all health and social care professionals with an interest in the diseases. Peter Daniels, our Director of
Glasgow – Thursday, 29 October.

Chair, Dr Edward Newman, Consultant Neurologist.
Information and Support, said the events play a vital role in helping professionals to provide the best care and support they can for those affected by PSP. He said:“We organise free study days around the UK throughout the year because we recognise that, as PSP and CBD are relatively rare, many professionals may not be familiar with the complex needs of those living with
Manchester – Friday, 30 October. Chair, Dr Alexander Gerhard, Consultant Neurologist.
Places cost £5 per person and booking is essential. Telephone 01327 322410 or email [email protected] for further information and a booking form or visit www.pspassociation.org.uk/events
In addition to sessions on pain management, challenging behaviour and oral hygiene, delegates will be able to choose from interactive workshops.

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Care

Lack of insight – a puzzling and frustrating problem

For the families of people living with a diagnosis of PSP or CBD, changes in their loved ones’ behaviour or personality can be puzzling and frustrating.

ACK of insight (Anosognosia) is a common feature of the diseases and one that can be especially
She explained that we know from difficult, or refusing to face the truth. Where necessary, assessment by a neuropsychologist can help differentiate between denial (which is a coping mechanism we all use in many research that lack of insight occurs as a result of damage to this area and that changes in pathology affect the ability to be self-aware and to have insight into personal actions. Cognitive changes in PSP and CBD
(including the lack of insight) can, however, be very variable. As Dr Rose said‘it is important to note that we are all unique’. Cognitive changes do progress with time and may affect a person’s mental capacity.

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challenging to understand and manage. It can result in a person taking risks (especially in respect of their mobility), failing to appreciate dangers and lacking empathy and sensitivity to others’ feelings. Here we briefly explain why this occurs and look at how to help overcome some of the difficulties. situations) and lack of insight.”

Coping with lack of insight

Coping with a loved one’s lack of insight can be very demanding. One gentleman who lives with his wife who has PSP explained:“As a carer you are constantly on tenterhooks. Falls can happen in a split second. My wife over reaches for things that are too far away, then she falls. If I need to leave the room I try to think ahead and anticipate what my wife may want, but I don’t always get it right. It can be a nightmare.” He said he found talking to the speech and language therapist most helpful.
“She understood PSP – she was very reassuring that it wasn’t my fault that my wife was unable to learn new things or remember ways of doing tasks,”he said. “I accept this now and know that every time we carry out a task I have to explain

Damage to frontal lobes

“It is not simply a denial of a problem but the genuine inability to recognise that the problem exists”

Dr Anita Rose, pictured, is Consultant Neuropsychologist at the Raphael Medical Centre in Tonbridge.
She explained that the cognitive ability to monitor personal behaviour and adjust accordingly is a very complex skill, believed to be contained and mediated in the frontal lobes of the brain. The frontal lobes play a vital role in organising information and using that information to interpret experiences.
Lack of insight is quite different from psychological denial.
“It is not simply a denial of a problem but the genuine inability to recognise that the problem exists,”explained Dr Rose. “A person with PSP or CBD who has a lack of insight is not being

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how to do it because she doesn’t remember about the need to do things

Getting help

Dr Rose’s tips for carers:

Speech and language therapists, occupational therapists and

When communicating – be gentle,

safely. encouraging and empathetic physiotherapists can all assist with advice

on techniques to minimise risks and/or provide equipment that may help. Seeking help early on before lack of insight and other cognitive issues progress is important for the person with PSP/CBD and their family. This may include assisting them to plan for their future and to record their wishes. See

pages 8 and 9.

For those in the later stages of PSP or CBD, lack of insight and associated risky behaviours may be highlighted as a supervision need in an assessment for NHS-funded Continuing Health Care (CHC). As a carer you are entitled to a Carer’s Assessment plus support around accessing services like respite care – contact your local Social Services before you reach a crisis point.
“You never know when something will happen, it’s totally unpredictable. I tried keeping a diary but there was no pattern

Stay calm – focus on the person

when voicing concerns and articulate your thoughts in a subtle and positive light

Remember – lack of insight is not

something that your loved one is choosing

Don’t argue! Logical arguments

typically will not work. Do not focus on trying to convince the other person to change, rather focus on achieving realistic goals to anything. It can be difficult for our relationship. I see my wife trying to do something I feel is dangerous, I say something but she carries on doing it. I might then shout at her to stop as I’m worried she’s about to hurt herself but she just feels I’m nagging her.” Dr Rose stresses that it is easier to work around difficulties rather to try to change behaviours. Strategies may often involve changing a situation rather than trying to‘change’(retrain/teach) a loved one.

Stay in control – create realistic goals

and structured timetables

Seek help and take care of yourself

– reach out to other family members, friends and voluntary/statutory services. Support groups can be helpful. Taking time away will enable you to provide better care and to find the caring role a more satisfying one
Request referral to specialist psychological services via your consultant or GP if you feel this is required.

Take regular exercise – this releases

endorphins that make you feel happy

Stay socially active – and recognise

that as a care giver you might have to be the one who organises things as others may worry about intruding on your time

Using LEAP

Dr Rose recommends using a strategy known as LEAP^* at an early stage prior to lack of insight becoming an issue. LEAP stands for:

LiSTen to what your loved one is saying, avoid jumping to conclusions and try

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to get a clear understanding of what they are trying to convey

Talk to others in a similar situation

– caring can be hard work emotionally and physically; contacting others who understand helps reduce isolation eMPATHiSe with your loved one. This will allow them to open up to you and not feel you are working against them

EAP

AGree on things you observe with your loved one about what does/does not work for them. This might involve making changes

Learn how to manage stress –

maybe try yoga or pilates or relaxation techniques
PArTnerSHiP – create a partnership with your loved one to work towards a

lifestyle that suits both parties. This means allowing them to be empowered by a partnership based on acceptance. Try to look at the strengths of your loved one and build on these.

Get professional help – don’t

neglect your own health and raise issues early with your GP and other professionals. They can help arrange services and extra support.

^*Originally proposed by Dr Amador in 2000 for people with mental illness but, with slight modifications, Dr Rose has found it helpful for people with neurological conditions.

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Care

It can be difficult to think about the future when you have a degenerative condition.

Planning for the future

However, planning ahead for your care and treatment can empower you to make informed decisions in your own time and can be helpful for you, those close to you and your healthcare team.

You can do this in a legally binding way by making an advance decision to refuse Treatment (adrT).

Rene Chang with his wife Helen

SP and CBD can be unpredictable and symptoms may change personal choice. Whether or not you write an ADRT is entirely up to you. It is important to speak to your doctor about your ADRT. They can outline treatment options and explain how refusing a treatment might affect you.

• Information about your diet, dress or

daily routine

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rapidly. Slowness of thought, difficulty recalling information, disorientation and problems with communication and cognition can make it impossible to make decisions about your daily life. This means you may decide it’s a good idea to write down your wishes whilst you are able to.

• Any fears you have around treatment

or care, eg if you are afraid of needles

• Your preference for where you would

like to live and be cared for, for example at home, in a hospice or hospital.

Expressing preferences for care

Aside from wishing to refuse certain treatments, you may want to express your preferences for care or detail any values or beliefs. An Advance Statement, or Statement of Wishes, allows you to do this. This is not legally binding in the same way as an ADRT, but in England and Wales it does have legal standing because anyone making a decision on your behalf must act in your‘best interests’. In doing so, they must consider your wishes, feelings, values and beliefs.

Continuing to make decisions

Remember, both an ADRT and an Advance Statement only come into effect if you cannot make a decision for yourself or cannot communicate. As long as you are able to, you will continue to make all your own
Unless you have made an ADRT, also known as a Living Will or Advance Directive, your healthcare team will decide on your treatment and care if you lose the ability to make decisions. These will always be made in your best interests, but what your doctors consider to be best for you may not be the same as what you feel is right for you. An ADRT can help to ensure your wishes will always be respected and can initiate what could be a difficult conversation with loved ones about the future. decisions. Carol Amirghiasvand, PSPA Helpline and Information Services Manager, said: “Don’t worry if it takes longer than you expected to decide what you want – these are important decisions and there are lots of things to consider. You may find it useful to talk things through with someone from your healthcare team or the PSPA helpline.”
An Advance Statement gives you the opportunity to express:
However, everybody is different and the way you want to plan ahead is a very

• Any likes or dislikes, for example if you

like to sleep with the light on

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ADRT: The Facts

CASE STUDY: ‘A few tears and a little laughter’

Rene Chang was diagnosed with PSP in 2013 and recently made an ADRT.
The couple also included in the discussions their wider family, who are
An ADRT allows you to record medical treatments that you do not want to have in the future, such as resuscitation, artificial nutrition or antibiotics
The retired Director of Transplantation all supportive of the ADRT. at a London teaching hospital lives in London with his wife Helen, who has a background in nursing.
Overall, Rene and Helen did not find the process particularly difficult.
“Inevitably there have been a few tears but also a little laughter involved
It will only come into effect if you no longer have the capacity to make or communicate decisions for yourself
Rene says making an ADRT empowered him with a sense of control in this process – doctors and nurses
You can use an ADRT to record the specific circumstances in which you would not want a treatment to be given, or would want a treatment to be stopped in an otherwise frustrating situation.
“Before I retired I was responsible for many people, both patients and staff,” he explained. “PSP has left me unable to look after myself without help from others and my frustration at times is enormous. By writing the ADRT I feel at least I have some direction over my future care and treatment.” do have a notoriously black sense of humour!”Helen said. Rene was able to address specific issues that he felt strongly about, such as resuscitation, admission to intensive care and PEG feeding.
“I feel better knowing that my wishes have been made clear. I think it was the right thing to do,”said Rene.
If you refuse certain life-prolonging treatments, you will still be given other treatments to keep you comfortable and pain-free
Rene’s internet research took him to