Information for people living with CF

Who are we?

Psy&STR

We are a team of 2 Psychologists and 1 Support Time Recover Worker.  The Psychologists are Dr Jess Brown, who is based in York and Dr Rochelle Crawford, who is based in Hull.  We also have a Support Time Recovery Worker, Ian Leonard, who works across both sites.

Clinical Psychology and Social Support in the York Hull Adult Cystic Fibrosis Unit

At the York Hull Adult CF Unit we believe it is important to address all aspects of your healthcare and treatment. As part of this, the Unit has 2 part-time clinical psychologists, Dr Jess Brown (York) and Dr Rochelle Crawford (Hull).  Jess works with the adult CF team for two days a week and also works with the York paediatric CF team for one day a week and has been working with the team since November 2017 and is based at the Department of Psychological Medicine at the Old Chapel.  Rochelle works 2 days per week with the Hull Adult Cystic Fibrosis Team and is based within Psychological Medicine in Hull.  she has been working with the team for the past 5 years.

 

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What is a clinical psychologist?

A clinical psychologist works with people who are having difficulties in their life and would like help in coping with them. Clinical psychologists are trained to use different models of therapy to help people talk about and tackle emotional problems, but do not use medication.

When may it be helpful to see a clinical psychologist and what sort of problems can they help with?

Living with a chronic illness like CF as well as other life stresses can be very difficult. How you cope with one aspect of your life can affect how you cope with having CF and its treatment, and vice versa. 

Many people find talking over their problems with someone is helpful. This might be a friend or relative, or might be one of the CF team who you feel you can talk to. This is often enough, but there may be times when you have a complex issue to deal with and need more help than they can offer, or have something you would like to discuss in private. A clinical psychologist can often help at these times.

Seeing a clinical psychologist definitely does not mean there is anything ‘wrong’ with a person psychologically. It simply means that a person is trying to improve their ways of coping with problems and they want to learn new skills.

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Here are examples of problems a clinical psychologist may be able to help with;

  • Feeling depressed, angry or worried about illness or treatment
  • Sleep difficulties
  • Anxiety, including fears about aspects of treatment
  • Self-esteem or body image issues
  • Difficult decisions about treatment, such as having a transplant
  • Issues around fertility and pregnancy
  • Problems in following treatment recommendations
  • Moving from paediatric to adult services
  • Problems resulting from CF impacting on family or other relationships
  • Pain management
  • Grief and loss

Psychologists are also able to make onward referrals to other services if that feels the most helpful way forward.

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What is involved?

If you are referred to psychology and you feel it will be helpful, then you will be offered an initial appointment. This is a time to talk through what difficulties you are experiencing and what you would like to get out of any potential further sessions. You could be offered some questionnaires to fill out to help explain how you are feeling, though completing them would be your choice.  

After this, you agree together on the goals of any future input, if any, and what this would involve. This is regularly reviewed throughout the work together.

Every effort is made to offer appointments alongside other CF out-patient appointments or during in-patient treatment if preferred, though this may not always be possible. Equally, some people prefer to be seen away from the ward and separate to other appointments.

Will it affect my medical care if I do not want to see the clinical psychologist?

If someone in the team feels it would be helpful for you to see the clinical psychologist, but you decide you do not want to, then that is your right. This decision will not affect your medical care or a re-referral in the future.  Often people are very unsure about seeing a psychologist at first and it may be helpful to have one appointment to see if it is for you or not and then decide.

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Information discussed in the sessions is confidential and would only be shared with other members of the team or others if you agree to this, or if essential to your treatment or safety.

Appointments

MDT clinics and annual reviews

You may see Jess or Rochelle at some MDT clinics though they won’t always be able to attend these. Once a year at the time of your annual review Jess or Rochelle will get in touch to offer you a longer conversation about how things are for you, any goals you want to think about for the year ahead and any support that could be helpful.

How can I be referred to see the clinical psychologist?

Anyone in the CF team or your GP can make a referral. Please talk to the team or Jess/Rochelle for any further information.

Right now across the UK, there are around 6,500 people in need of an organ transplant, including around 150 children and teenagers. On average three people die every day in need of an organ transplant because there just aren’t enough organ donors.

Register here

Fundraising

We are always amazed and extremely grateful when people go out of their way to raise money for cystic fibrosis services. Some people are motivated by a family member or friend living with CF, and some people have heard about the disease in the press and offer to help.

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