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Chest, heart and stroke conditions: what patients and carers want to know

Laura Hastings BSc RGN Dip HSW
Lead Advice Line Nurse
Chest Heart & Stroke Scotland

Edie Garlick BSc RGN DN Dip CHD
Advice Line Nurse
Chest Heart & Stroke Scotland

There is a significant amount of support available for patients with chest, heart and stroke illness and a number of charities provide information and support services that nurses can access to help their patients.

Chest, heart and stroke conditions affect a huge number of people in the UK. Due to advances in research and treatment, and government policies such as the smoking ban, an increasing number of people are now surviving, and living longer, with heart and lung disease, and stroke.

More patients and carers will be affected in the future, so it is important that nurses have a good understanding of the issues that affect them in their daily lives. Voluntary sector organisations can provide information to help nurses prepare for the types of questions patients and carers are likely to ask, and advise on where local support services can be accessed.

Chest Heart & Stroke Scotland
Chest Heart & Stroke Scotland (CHSS) works to improve the quality of life of people in Scotland with chest, heart and stroke illness, through medical research, influencing public policy, advice and information and support in the community. The cHSS Advice Line nurses receive over 2,000 calls a year and answer enquiries by email, text message, Facebook and Twitter. The nurses provide emotional support and confidential, independent information and advice based on up-to-date, Scottish and UK guidelines (for example, SIGN, NICE, BHS).
The following three scenarios are based on real calls received by the CHSS Advice Line, and list the help, resources and signposting provided by the Advice Line nurses.

Stroke
One in four people suffering from a stroke each year in Scotland are still of working age.¹ Amy, 37, called the Advice Line six months after having a stroke. She said she felt very stressed and, although her family and friends told her she had made a good recovery, she didn't feel that way herself. Amy told the nurse that she often gets muddled and can't remember things. She said shefelt tired all the time but couldn't sleep because she was terrified she would have another stroke. She wanted to prevent another stroke but didn't know how.

Amy went on to say that her blood pressure had been 169/98 and her cholesterol was 6.5 so the doctor had given her lisinopril and simvastatin. However, the levels had now returned to normal and she did not see any point in continuing to take these medications.

Amy started to cry, saying she didn't know anyone else her age who had suffered a stroke. She had to give up her job driving the school bus and was feeling isolated being at home all day on her own. Now that she was unable to work, her partner was having to work overtime and they were really worried about money.

She told the nurse how frustrating it was for her, not being able to use her left hand. Her partner tried to help but he was getting fed up with Amy's mood swings and they were arguing all the time. Amy said their two children were also “acting up” with all the stress in the house and she didn't know what to tell them, or how to cope. She felt her life was out of control and she was really starting to feel depressed.

The categories and sources of support we gave Amy at the CHSS Advice Line were as follows:

Medical advice
From Scottish and UK guidelines: SiGN 118 and NicE cG68²,³

  • Empowerment through information provision and advice on specific questions to ask the GP
  • Explanations about statins and anti-hypertensive medications and the importance of taking them. check on aspirin and dipyridamole if ischaemic stroke. Ask about other drugs she is taking
  • Ask about her risk factors: diabetes, smoking, alcohol, diet, exercise, obesity, family history
  • High blood pressure advice: medications, BP checks, salt, alcohol, weight control
  • Healthy living advice: healthy eating and exercise
  • Advice on strategies for coping with fatigue and anxiety
  • Insomnia advice and information, and speak to GP about sleeping problems
  • Written information to reinforce advice given, for example:

- CHSS publications
- NHS Information Centre
- Patient UK.

Social issues

  • Discuss alternative employment options, training or volunteering and signpost to Momentum (vocational rehabilitation service for people with traumatic brain injury)
  • Encourage to ask for support from family and friends Quality of life issues: what hobbies/interest did she have before stroke? Find local groups/clubs to signpost her to
  • Equipment/ adaptations: Occupational therapy, Disabled Living Foundation, local suppliers of equipment
  • Signpost to:

- Local CHSS stroke support group
- Different Strokes (mutual support for young stroke survivors) - Headway (support for people with acquired brain injury,
including stroke)

  • Support for family: CHSS publications, Advice Line, signpost to local carers centre, eg:

- Princess Royal Trust for Carers
- Crossroads Care

  • For financial help and advice signpost to:

- Benefits Enquiry Line
- Citizens Advice Bureau
- CHSS Personal Support grants (in Scotland).

Emotional support/counselling

  • Explore whether depressed
  • Written information on coping with anxiety and/or depression
  • Signpost to:

- Local counselling service
- British Association of Counselling and Psychotherapy
- COSCA
Local couple counselling service:
- Relate
- Relationships Scotland
Out-of-hours stress and anxiety helplines:
- Breathing Space
- No Panic.

Chest
There are many different respiratory diseases; however, with 101,000 people in Scotland living with chronic obstructive pulmonary disease (COPD) it is the main chest condition we receive calls about on the CHSS Advice Line.

One such call was from a 67-year-old man, Mr Brown, who had recently been diagnosed with COPD. Mr Brown was becoming increasingly short of breath and feeling very anxious. He was keen to know how to help himself deal with his condition. He admitted that he was a smoker and despite several attempts he was finding it very difficult to stop. Mr Brown told
the nurse that he was a keen gardener and was worried that he wouldn't be able to continue to look after his garden now he has COPD.

Medical advice

  • Based on the NICE guideline Management of chronic obstructive pulmonary disease in adults in primary and secondary care.⁴
  • Explanation about COPD
  • Explanation about inhalers. Advised him to make an appoint- ment with his practice nurse to get his inhaler technique checked
  • Advice on winter vaccinations: influenza and pneumococcal
  • Advice on strategies to deal with breathlessness and fatigue
  • Discussion on risk factors related to smoking and COPD
  • Discussion related to prevention of chest infections Explanation about pulmonary rehabilitation
  • Explanation about healthy living advice: diet, exercise, alcohol, weight control
  • Signpost to: 

- Smokeline (Quitline in England and Wales)
- Local smoking cessation clinic Explanation about pulmonary rehabilitation and advise to ask GP if appropriate.

Social issues

  • Refer to local CHSS chest support group
  • If additional support is required British Lung Foundation Breatheasy group
  • Signpost to: Thrive, a gardening charity which supports people through social and therapeutic horticulture who are disabled or living with long-term conditions Gardening for Disabled Trust provide grants for adapting private gardens and also give grants for tools, raised beds, paving and greenhouses.

Emotional support

  • Information on coping with anxiety and breathing control exercises
  • Relaxation and breathing control exercises.

Heart
There are now an estimated 100,000 people in Scotland living with heart failure and the rates of this disabling and long-term condition are currently increasing.

Bob phoned the Advice Line about his 80-year-old wife Dot who had heart failure. He told the nurse that he is Dot's carer and as she is rarely well enough to go out, they both felt quite isolated at home and Dot was feeling very down. Bob was worried about a lack of money and the fact the bills were going up and winter was coming as he wanted to keep the house warm for Dot.

Medical advice

  • Advice from NICE/SIGN guidelines.⁵,⁶
  • Explanation about heart failure Healthy lifestyle: diet, exercise, smoking and alcohol
  • Controlling symptoms: weigh daily, eat less salt, keep as active as possible, report any changes to GP
  • Discussion on medications she is taking
  • Advice on winter vaccinations: influenza and pneumococcal.


Social issues

  • Information about CHSS Heart Failure Support service
  • Signpost to local carers centre through Princess Royal Trust for Carers
  • For financial support Bob was signposted to:

- Citizens Advice Bureau
- Benefits Enquiry Line (UK-wide)
- Energy Saving Trust
- CHSS Personal Support Grants (in Scotland).

Emotional support

  • Enquire about any hobbies/interests Dot enjoyed previously and could be assisted to participate in again.
  • Explore whether depressed.

Conclusion
Patients and carers living with chest, heart or stroke illness want to know about self-management and how to improve their quality of life. Charity helplines such as Chest Heart & Stroke Scotland Advice Line empower patients and carers by providing up-to-date, evidence-based verbal and written information, referral to local support services and signposting to other relevant organisations. These services are free for all nurses to access, and will save time and augment holistic care for your patients.

References
1.    Information Services Division Scotland (ISD). Stroke Statistics Update. Edinburgh: ISD; 2010.
2.    Scottish Intercollegiate Guidelines Network (SIGN). Management of patients with stroke: rehabilitation, prevention and management of complications, and discharge planning SIGN 118. Edinburgh: SIGN; 2010.
3.    National Institute for Health and Clinical Excellence (NICE). Clinical guideline: Stroke Diagnosis and initial management of acute stroke and transient ischaemic attack (TIA). London: NICE; 2008.
4.    National Institute for Health and Clinical Excellence (NICE). Chronic obstructive pulmonary disease: management of chronic obstructive
pulmonary disease in adults in primary and secondary care. London: NICE; 2010.
5.    Scottish Intercollegiate Guidelines Network (SIGN). Management of chronic heart failure. Edinburgh: SIGN; 2007. 6.    National Institute for Health and Clinical Excellence (NICE). Chronic heart failure: management of chronic heart failure in adults in primary and secondary care. London: NICE; 2010.

Resources
British Association of Counselling and Psychotherapy
www.bacp.co.uk
Chest Heart & Stroke Scotland www.chss.org.uk
COSCA www.cosca.org.uk
Relate www.relate.org.uk
Relationships Scotland www.relationships-scotland.org.uk Breathing Space www.breathingspacescotland.co.uk
No Panic www.nopanic.org.uk
NHS information Centre www.ic.nhs.uk
Patient UK www.patient.co.uk
Lead Scotland (Linking education and Disability) www.lead.org.uk
Skill (National Bureau for students with Disabilities) www.skill.org.uk
Momentum (vocational rehabilitation service for people with traumatic brain injury) www.momentumscotland.org
Disabled Living Foundation www.dlf.org.uk
Different Strokes www.differentstrokes.co.uk
Headway www.headway.org.uk
Princess Royal Trust for Carers www.carers.org
Crossroads Care www.crossroads.org.uk
Benefits Enquiry Line www.direct.gov.uk
Citizens advice Bureau www.citizensadvice.org.uk
Smokeline www.canstopsmoking.com
British Lung Foundation Breatheasy Group www.lunguk.org Thrive www.thrive.org.uk
Gardening for Disabled Trust www.gardeningfordisabledtrust.org.uk
Energy Saving Trust www.energysavingtrust.org.uk